https://www.knowhealth.tech/blog-v2 daily 0.75 2025-06-12 https://www.knowhealth.tech/blog-v2/medications-for-igan-ac4zf monthly 0.5 2025-06-10 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685109-YP65MMO674D2FNFPQAB3/Treatment-1+2.jpg Blog v2 - How IgA Nephropathy Is Treated: A Look at Today’s Medications and Tomorrow’s Breakthroughs - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685106-E5NXKUU2BCN4J6NMIMYA/iStock-1170702221-kidney+with+pills.jpg Blog v2 - How IgA Nephropathy Is Treated: A Look at Today’s Medications and Tomorrow’s Breakthroughs - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/role-of-education-in-rare-disease-treatment-plans-xhmbe monthly 0.5 2025-05-29 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685745-12SOIVOLN7AWDZC26H2B/image0.jpeg Blog v2 - Empowering Patients: The Role of Education in Rare Disease Treatment Plans - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685742-89TP4X04FVGEWTWOKNCM/unnamed+%282%29.jpg Blog v2 - Empowering Patients: The Role of Education in Rare Disease Treatment Plans - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/five-years-of-waiting-rooms-p2dgh monthly 0.5 2025-05-21 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684643-IQ79TN98YTX68LUEC0X1/27ABC2C9-A8DF-48D4-B785-70DEDFA9DAD3_4_5005_c.jpeg Blog v2 - Five Years of Waiting Rooms - Make it stand out Laura and Alden https://www.knowhealth.tech/blog-v2/owning-what-makes-us-rare-jtlyt monthly 0.5 2025-05-15 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685450-TM7EQM6N74L30BFD7AY5/photo-collage.png%282%29.jpg Blog v2 - Owning What Makes Us Rare - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/rare-diseases-south-africa-a-beacon-of-hope-a9h88 monthly 0.5 2025-05-12 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685701-R50JARPROW184BKBTCX5/unnamed+%281%29.jpg Blog v2 - Rare Diseases South Africa: A Beacon of Hope - Make it stand out Kelly du Plessis https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685698-EST282HSNDR21PSFAPM3/Untitled+design.jpg Blog v2 - Rare Diseases South Africa: A Beacon of Hope - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/understanding-epidermolysis-bullosa-a-journey-of-pain-and-perseverance-3daap monthly 0.5 2025-05-08 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686100-XHTU5CQSFH1NJITGMISL/unnamed.png Blog v2 - Understanding Epidermolysis Bullosa: A Journey of Pain and Perseverance - Make it stand out Cady (on the left) and Toni (on the right) https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686104-ST2UFH37B0L6KYQBZ1G1/unnamed+%281%29.png Blog v2 - Understanding Epidermolysis Bullosa: A Journey of Pain and Perseverance - Make it stand out Cady after running the Two Oceans Marathon in Cape Town https://www.knowhealth.tech/blog-v2/new-findings-igan-3dtc2 monthly 0.5 2025-06-06 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685339-UALXZTT2QA1PPWKNX52L/STATUS+OF+PARTICIPANTS.jpg Blog v2 - Recent survey reveals new findings about symptoms of pain and fatigue in people living with IgAN - Make it stand out IgAN Status of the 1515 Participants in the Survey https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685342-RJWAO6QZ11OBW41ZEGEV/unnamed+%281%29.png Blog v2 - Recent survey reveals new findings about symptoms of pain and fatigue in people living with IgAN - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685349-0TRXKF9FULLVH504SGYW/unnamed+%283%29.png Blog v2 - Recent survey reveals new findings about symptoms of pain and fatigue in people living with IgAN - Make it stand out Severe Fatigue by Increased Level of Proteinuria (1-3 and 3+) https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685346-3K9DVE5NVOY4AFWDSFLK/unnamed+%282%29.png Blog v2 - Recent survey reveals new findings about symptoms of pain and fatigue in people living with IgAN - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/david-fajgenbaum-fl57d monthly 0.5 2025-03-25 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684398-80M9CEO6LQ790V9KV12K/4.png Blog v2 - Dr. David Fajgenbaum: How one doctor turned hope into action to treat his own rare disease - Make it stand out Dr. David Fajgenbaum, American immunologist, author, and co-founder and President of the Castleman Disease Collaborative Network (CDCN) https://www.knowhealth.tech/blog-v2/improving-access-to-specialized-care-2mwcc monthly 0.5 2025-03-25 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684822-ZLEOVS7ZR25QL4PXKSN7/RARE%2BSPOTLIGHT%2B%25281000%2B%25C3%2597%2B667%2Bpx%2529.png Blog v2 - Improving Access to Specialized Care For Myositis - Make it stand out Rohit Aggarwal, MD, MS, Professor, Rheumatologist, Auto-Immune Disease Expert. https://www.knowhealth.tech/blog-v2/promising-news-from-a-clinical-study-in-becker-muscular-dystrophy-c3txw monthly 0.5 2025-01-30 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685614-EWVADL8PVY9N0H5M18RX/female-researcher-with-clipboard-biotechnology-laboratory-male-colleague.jpg Blog v2 - Promising News from a Clinical Study in Becker Muscular Dystrophy - Make it stand out Image by freepik https://www.knowhealth.tech/blog-v2/how-chris-anselmo-learned-to-follow-his-heart-p82sx monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684736-MHKGLRK2UEMWZX1K6KNF/jean-louis-paulin-rmV4Zct9Kcg-unsplash.jpg Blog v2 - Living Your Dreams When Living with Rare Disease: How Chris Anselmo Learned to Follow His Heart - Make it stand out Photo by Jean-Louis Paulin on Unsplash https://www.knowhealth.tech/blog-v2/curegrin-59d9b monthly 0.5 2025-01-24 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684390-97TY77G0VG9REXVQBEYS/Picture1.png Blog v2 - Organization Spotlight: CureGRIN - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684386-QRNF89FQXOAGPQRKH8JL/Untitled%2Bdesign.jpg Blog v2 - Organization Spotlight: CureGRIN - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/share-your-rare-gent-ttpce monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685812-HU3TBG63DJQIMDH62B21/image1.jpeg Blog v2 - Share your Rare: Edward Gent - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685816-DDQHUEK60GC5L9FY09PV/Screen%2BShot%2B2024-10-15%2Bat%2B5.03.45%2BPM.png Blog v2 - Share your Rare: Edward Gent - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/news-in-scd-lzdrd monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685368-SV4AE0N3R3LBBMA0NYA1/roman-kraft-_Zua2hyvTBk-unsplash.jpg Blog v2 - Latest News in Sickle Cell Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/bliss-health-jr53k monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683926-YB1DTEEO5WPMUOZ4EU5W/647e85ecab82f8b35b1e25a4_Screenshot%2B2023-05-16%2B180712.png Blog v2 - Organization Spotlight: Bliss Health - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683923-GUS0VM4HJNKL7H2YBK9O/Untitled%2Bdesign.png Blog v2 - Organization Spotlight: Bliss Health - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/perceptions-of-pain-research-shows-its-personal-azws6 monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685499-QU0ISX0I7X9KN4PLWINB/unhappy-young-woman-suffers-from-pain-neck-feels-tired-massages-neck-feels-discomfort-closes-eyes-wears-casual-orange-jumper-isolated-blue-wall.jpg Blog v2 - Perceptions of Pain: Research Shows It’s Personal - Make it stand out Designed by wayhomestudio https://www.knowhealth.tech/blog-v2/access-to-high-cost-treatments-pz3zf monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683783-RN1PT1SSRFW2YAS7LURF/overhead-view-stethoscope-us-currency-note-white-background.jpg Blog v2 - Three Ways to Get Access to High-Cost Treatments - Make it stand out Designed by freepik https://www.knowhealth.tech/blog-v2/becca-salky-rz8je monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683896-T7W0R3KJ9ZW531DQB045/Salky.png Blog v2 - Changemakers in Rare: Becca Salky - Make it stand out Becca Salky, Rare Disease Warrior and Self-Taught Medical Detective. https://www.knowhealth.tech/blog-v2/rare-insights-new-podcast-from-know-rare-6d95f monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685708-B7I0BHZJ9B32I09E59XU/podcast_art%2Bcopy.jpg Blog v2 - Announcing Know Rare’s New Podcast Series: Rare Insights - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/mens-health-week-2024-ttxzt monthly 0.5 2025-01-24 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685116-SDUJ9V1INRAVC80WUQRV/iStock-1319763230.jpg Blog v2 - Why Men's Health Week Matters for the Rare Community - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/know-rare-pride-month-2024-pdx9m monthly 0.5 2025-01-02 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684933-J5AVSTHQLY63P4OUUOVZ/iStock-1471006528.jpg Blog v2 - How Know Rare is Celebrating Pride Month - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/living-with-myositis-lindsay-guentzel-webinar-know-rare-connect-ewkjj monthly 0.5 2025-01-21 https://www.knowhealth.tech/blog-v2/a-wise-investment-risk-reward-chris-anselmo-29rn7 monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683772-WYOJ2C0YYQ17JLSJ9RMT/iStock-1252802545.jpg Blog v2 - Embracing Risks: How Taking Chances Enhances Life with a Rare Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683768-QVAEIA3ZSP7I8D178Y4D/iStock-2151566204.jpg Blog v2 - Embracing Risks: How Taking Chances Enhances Life with a Rare Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/the-sumaira-foundation-at-emory-clinic-tsfs-atlanta-patient-day-2024-mogad-nmosd-wn5cp monthly 0.5 2025-01-24 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685941-9E8186C2RDQ3REODH5U5/sumairaAtlanta.png Blog v2 - Mark Your Calendar for TSF's Atlanta Patient Day - Make it stand out The Sumaira Foundation presents the Patient Day for NMOSD & MOGAD in Atalanta, on July 21, 2024 https://www.knowhealth.tech/blog-v2/international-clinical-trials-day-2024-snxc2 monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684853-GBZ1YATO93U17QBPGDWM/iStock-1397731964%2BCLINICAL%2BTRIALS.jpg Blog v2 - Celebrating International Clinical Trials Day - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/exercise-and-myositis-new-research-j2nrz monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684584-T8XM45QZSMUPS2EZMR6F/iStock-932252642.jpg Blog v2 - The Surprising Link Between Exercise and Myositis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/gina-de-millo-wagner-memoir-forces-of-nature-9xabj monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684697-X63C5L5ZU7T2VLZ30AN6/9781960018793_p0_v1_s600x595.jpeg Blog v2 - On Family, Fortitude, and Forces of Nature - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/lindsay-guentzel-on-life-with-myositis-kkdg5 monthly 0.5 2025-01-07 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684989-7BA5SCLDV8VJNWC5C0EU/LindsayMyositisHeader.jpeg Blog v2 - Lindsay’s Story: What It’s Like to Live with Myositis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684992-EKG1GHRFVJCUXP8F62PS/LindsayMyositisFacialSwelling.png Blog v2 - Lindsay’s Story: What It’s Like to Live with Myositis - Make it stand out Guentzel at the onset of her facial swelling in January 2023 (left); and hours after being discharged from the emergency room three weeks later (right). https://www.knowhealth.tech/blog-v2/may-is-myositis-awareness-month-2024-k24lm monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685090-9PBEAZVIHE0D0WOAZ4ST/Untitled%2B%25281200%2Bx%2B800%2Bpx%2529.png Blog v2 - May Is Myositis Awareness Month - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/the-underappreciated-art-of-slowing-down-b77b7 monthly 0.5 2025-01-21 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685949-CBFAR5NO0K5HURUHSSK5/iStock-1016714956.jpg Blog v2 - The Underappreciated Art of Slowing Down - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/q1-2024-rare-disease-news-3clz3 monthly 0.5 2025-01-08 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685643-P5HZNXBQRUOQYENMQUQN/iStock-637307756.jpg Blog v2 - Why 2024 Is Already an Encouraging Year for the Rare Disease Community - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/organization-spotlight-international-waldenstroms-macroglobulinemia-foundation-iwmf-35j6m monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685421-5UZ9LU52VKMDNGUY0SK7/IWMF_Spotlight.jpg Blog v2 - Organization Spotlight: The International Waldenstrom's Macroglobulinemia Foundation (IWMF) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/defining-the-disease-the-mog-project-mydfp monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684406-VFR9LZVFDV042QM7XSN3/iStock-1168894271.jpg Blog v2 - Defining the Disease: The MOG Project - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/organization-spotlight-the-mog-project-j6me4 monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685432-6EO66F1QA48LVCNR6E8P/OrgSpotlightMOGProject.jpg Blog v2 - Organization Spotlight: The MOG Project - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/congenital-myasthenic-syndromes-cms-infograph-ktm39 monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684335-L7EJE1JHPZX4UFSXR64M/CMS%2Bvs%2BMG%2B-%2BKnow%2BRare%2Bversion%2B-03-26-2024.jpg Blog v2 - How is Congenital Myasthenic Syndrome (CMS) Different from Myasthenia Gravis (MG)? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/why-clinical-trials-are-crucial-for-congenital-myasthenic-syndromes-cms-y33m2 monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686193-W788BRYM2JHI2ERADC7R/gently%252C%2Bfrequently%252C%2Bnaturally..png Blog v2 - 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Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/orits-story-mccune-albright-syndrome-with-fibrous-dysplasia-wfbbn monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685440-XYWIXRB32KVMR0R09XWQ/oritsStoryWIDE.jpeg Blog v2 - Visiting the Disease: Orit’s Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/trial-equity-organization-spotlight-et8g2 monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686076-WACCYVUZ1XW86NYI1UV3/Otis%2B2.jpg Blog v2 - Organization Spotlight: Trial Equity - Make it stand out Trial Equity cofounder and principal consultant Otis Johnson https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686073-MOTNDLQC1515XHPD0BE8/KR_BLOG_SPOTLIGHTS.png Blog v2 - Organization Spotlight: Trial Equity - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/gm2-pfdd-meeting-rwf6m monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684719-XTSJ5ZX6NQCDG4BQJ1IP/hannah-busing-Zyx1bK9mqmA-unsplash%2B%25281%2529.jpg Blog v2 - National Tay-Sachs & Allied Diseases Association Hosts First of Its Kind Drug Development Meeting for GM2 - Make it stand out Photo by Hannah Busing on Unsplash https://www.knowhealth.tech/blog-v2/celebrating-rare-disease-month-2024-with-know-rare-p6953 monthly 0.5 2025-01-29 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684237-QZ3T7GI45NBYR0C9RQRP/iStock-1158005042.jpg Blog v2 - Four Empowering Ways to Mark Rare Disease Month - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/how-to-ask-for-help-chris-anselmo-k68eb monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684757-S3IMBTJ4IHW6I6VEFAIT/iStock-1422164584.jpg Blog v2 - Embrace the Ask: How to Seek The Support You Need - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/raising-teens-substance-abuse-and-rare-disease-ctbck monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685655-5E15ULNDFOGE8ZODP72J/raretipsforyouth.jpg Blog v2 - Teens, Substance Use, and Rare Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685659-47YXJ7P2IPB19SFARZ68/Hadland_Headshot.jpg Blog v2 - Teens, Substance Use, and Rare Disease - Make it stand out Dr. Scott Hadland https://www.knowhealth.tech/blog-v2/news-roundup-rare-disease-news-2024-yepa6 monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685375-6TY6L967DK1O94C2BHZA/iStock-1302842394.jpg Blog v2 - Rare Disease News Roundup - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/why-its-important-to-ask-for-help-chris-anselmo-x6n3r monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686201-4BQMDH6RWYU56EJ0OF02/iStock-1354589875.jpg Blog v2 - Why Is It So Hard to Ask for Help? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686204-RERHT5LPHJNXDQZEO69G/iStock-1390777149.jpg Blog v2 - Why Is It So Hard to Ask for Help? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/edgewise-duchennes-beckers-new-treatment-n2wbl monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684515-IUFZCGIMRWIDTACPXROR/iStock-1653283480-clinical-trial-FDA.jpg Blog v2 - Edgewise Therapeutics: New Treatments for Duchenne and Becker Muscular Dystrophy - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/national-influenza-vaccination-week-a93sx monthly 0.5 2025-01-22 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685298-QQJ24TSA3LLSCW01GT5Y/iStock-1326666679.jpg Blog v2 - Safeguard Your Holidays: The Importance of Flu Protection - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/avery-project-caitlin-eppes-tcpwb monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683873-KSPJDM67Y5BKWDEB0FCL/Avery.jpeg Blog v2 - Avery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey - Make it stand out Avery, in a gait trainer https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683879-63IT42BEIK4163QVQAOB/EppesFamily.jpeg Blog v2 - Avery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey - Make it stand out The Eppes family https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683876-ZEPRKTSBXF2SC4D5RLFP/AveryCharlieWIDE.jpeg Blog v2 - Avery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey - Make it stand out Avery (left) and Charlie (right), siblings https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683870-3A0MRZP2DM48H3OW4LF5/AveryCaitlinWIDE.jpeg Blog v2 - Avery's Remarkable Rare Path: A One-in-a-Million Diagnostic Journey - Make it stand out Caitlin Eppes (left), rare mother, with her daughter Avery (right). https://www.knowhealth.tech/blog-v2/anxiety-the-unwelcome-visitor-chris-anselmo-mehr9 monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683860-TJJZ7FBTIQ6BSVJQK235/iStock-1064027400.jpg Blog v2 - Anxiety: The Unwelcome Visitor - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683863-WHXOFG7N38NIBE9VTA7D/iStock-1323039401.jpg Blog v2 - Anxiety: The Unwelcome Visitor - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/reducing-steroid-usage-for-rare-disease-clinical-trials-l2znw monthly 0.5 2025-01-22 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685732-E4FTZTMZ7LWCSGN229LO/steroidSparingWide.jpg Blog v2 - Have A Goal To Taper Off Your Use Of Steroids? Many Clinical Studies For New Drugs Share The Same Mission - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685734-6A9D0LUZB499B8E8D1IK/towfiqu-barbhuiya-ssZ6x-gaO0c-unsplash.jpg Blog v2 - Have A Goal To Taper Off Your Use Of Steroids? Many Clinical Studies For New Drugs Share The Same Mission - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/pregnant-after-rare-ejjtp monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685596-4N8IIPDLPFJ5WQKBGYBI/IMG_0445.jpg Blog v2 - Pregnant After Rare: Week 30 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685593-WVNSW7OZ48O4M6DEZIZU/headerimagePregnantAfterRare.jpg Blog v2 - Pregnant After Rare: Week 30 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/know-rare-storybook-ball-2023-gl9bg monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684963-P1M5OPD2JGHQ6SS80K7J/Laura_.jpg Blog v2 - From Medical Advisor to Fundraiser: A Mom and Know Rare Team Member Helps the Hospital that Helped Her https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684957-Y7FBGU9950FFLLH93HSS/Sponsorship.jpg Blog v2 - From Medical Advisor to Fundraiser: A Mom and Know Rare Team Member Helps the Hospital that Helped Her https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684945-DN5TYPEEK0WQPOLS0IXZ/LauraWillStorybookBall.jpg Blog v2 - From Medical Advisor to Fundraiser: A Mom and Know Rare Team Member Helps the Hospital that Helped Her - Make it stand out Laura Will, KnowRare Medical Advisor, and Dr. Will Curry, Chief Medical Officer of Massachusetts General Hospital. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684942-6UO7YP2XLKF6RI55DETF/KnowRareStorybookBall.jpg Blog v2 - From Medical Advisor to Fundraiser: A Mom and Know Rare Team Member Helps the Hospital that Helped Her - Make it stand out Know Rare team members Liz Kay (Business Development and Partnerships), Laura Will (Medical Advisor), and Kelly Pesek (Study Center Support Manager) at the Storybook Ball (pictured left to right). https://www.knowhealth.tech/blog-v2/metabolic-dietician-nutrition-rare-disease-r22pf monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685138-V7TWHZFK5UD1GWXSM6NV/iStock-1353631308.jpg Blog v2 - Expert Advice on Managing Nutrition for Rare Disease Patients: Insights from a Metabolic Dietitian - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685132-QNRQN26D5BFB8IGV76IN/iStock-1060858070.jpg Blog v2 - Expert Advice on Managing Nutrition for Rare Disease Patients: Insights from a Metabolic Dietitian - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685135-PC1O4SP8BRD1UKJKBQ75/iStock-184982138.jpg Blog v2 - Expert Advice on Managing Nutrition for Rare Disease Patients: Insights from a Metabolic Dietitian - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/parents-on-life-with-refractory-epilepsy-seizures-z5d6d monthly 0.5 2025-01-19 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685469-4QLSVF1K9JBLJN5IGPPP/iStock-1464627960.jpg Blog v2 - Refractory Epilepsy: Reflections and Insights from Parents and Clinicians - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685466-7VYN29ESKT8ZCE38JA20/IMG_3701_wide.jpg Blog v2 - Refractory Epilepsy: Reflections and Insights from Parents and Clinicians - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/know-rare-tips-emotional-support-for-a-newly-diagnosed-friend-af9kl monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684980-636B5W8MEVOW6I9PI2AG/iStock-1469986466.jpg Blog v2 - Know Rare Tips: How to Support a Friend Who’s Been Diagnosed With a Rare Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/child-life-specialist-katie-whelan-gahg2 monthly 0.5 2025-03-07 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684253-D2ZTT8O4W0JZ5B4204VT/IMG_2331.jpg Blog v2 - What is a Child Life Specialist? - Make it stand out Laura Will (center), Know Rare Community Manager, playing with her two children, Alden and Hadley (left to right). https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684256-P0NE8HYJ6XHA4UNNN2CU/%2527s%2BDaily%2BActivities.jpg Blog v2 - What is a Child Life Specialist? - Make it stand out An Activities of Daily Living (ADL) chart that Katie developed for a child in her care. https://www.knowhealth.tech/blog-v2/the-power-of-palliative-care-f8akb monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685926-2VLMCICHG3I5YGLDL09T/9814.jpg Blog v2 - The Power of Palliative Care - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/fda-approval-zilbrysq-zilucoplan-raise-clinical-study-whmmx monthly 0.5 2025-01-21 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684627-8EO3FMK1JKAM817LQ73A/iStock-1286971245.jpg Blog v2 - Clinical Trial Paves the Way for a Groundbreaking New Myasthenia Gravis Treatment - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/know-rare-living-with-refractory-seizures-video-b9km9 monthly 0.5 2025-01-20 https://www.knowhealth.tech/blog-v2/know-rare-connect-journaling-your-journey-dy4ep monthly 0.5 2025-01-16 https://www.knowhealth.tech/blog-v2/know-rare-connect-first-live-event-gthl6 monthly 0.5 2025-01-20 https://www.knowhealth.tech/blog-v2/chris-anselmo-know-rare-telling-your-story-6ahhe monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684282-4YE0VEFC04RH453MQDQK/microphone-matthias-wagner-QrqeusbpFMM-unsplash.jpg Blog v2 - We All Have a Story to Tell - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684278-K96LDK7W9Y66M0FC65UN/whats-your-story-iStock-1468533523.jpg Blog v2 - We All Have a Story to Tell - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/chris-anselmo-know-rare-role-models-3c72f monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684268-GUJ379VWOGKNLXX73SL7/which-way-guidance-iStock-539945390.jpg Blog v2 - Role Models Light the Way - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684265-Y6TEAOMP1C800QZ0N85F/help-support-advice-guidance-iStock-519749080.jpg Blog v2 - Role Models Light the Way - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/introducing-chris-anselmo-hello-adversity-for-know-rare-rphfd monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684862-5X9IJXA4GSLQH0OVLZ9X/Chris%2BAnselmo%2Bheadshot.jpg Blog v2 - Hello, Adversity: Introducing Chris Anselmo - Make it stand out “Hello, Adversity” author Chris Anselmo is a new contributor to Know Rare. https://www.knowhealth.tech/blog-v2/donnarae-menard-clinical-trials-nlcdp monthly 0.5 2025-01-21 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684440-022V15U80KCVIETDH4WD/DonnaRae%2BMenard%2Bwide.jpg Blog v2 - My Unexpected and Powerful Clinical Trial Journey - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/srna-z24yk monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685849-0ABDJM9PD74XVZPW0WC8/KR_BLOG_SPOTLIGHTS%2B%25283%2529.png Blog v2 - Organization Spotlight: Siegel Rare Neuroimmune Association (SRNA) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/cure-cmd-ynpft monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684371-RWLQ9HS1WZBOYIGZ09HS/KR_BLOG_SPOTLIGHTS%2B%25282%2529.png Blog v2 - Organization Spotlight: Cure CMD - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/avm-alliance-ja3yf monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683888-BSZTTTUK8X2DL441SZQT/KR_BLOG_SPOTLIGHTS.png Blog v2 - Organization Spotlight: The AVM Alliance - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/participating-in-a-clinical-trial-zbp8c monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685479-I8WB4SC4KSQNK8IZL2OL/istockphoto-1138295318-612x612.jpeg Blog v2 - Why You Should Consider Participating in a Clinical Trial - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/how-much-do-you-know-about-your-myositis-ghmsn monthly 0.5 2025-01-02 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684744-LQG0AJR4E9YVDDLURSLD/unnamed%2B%25283%2529.png Blog v2 - How Much Do You Know About Your Myositis? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/participating-in-a-research-study-abye6 monthly 0.5 2025-01-24 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685487-23703PECSC1NR68CM6M2/unnamed.jpeg Blog v2 - What do you know about participating in a research study? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/thriving-rare-2ddcz monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685956-1HK04T7JT2VGHWLE5H5B/IMG_20230626_130740_213.jpg Blog v2 - Thriving Rare - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/share-your-rare-krystel-el-koussa-gdw9f monthly 0.5 2025-01-21 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685825-PX4LNQY6VFWSPX1MGSLM/IMG_1963.jpg Blog v2 - Share your Rare: Krystel El Koussa - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/the-language-of-rare-kfghh monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685919-XUFOCXHV2XOJKBMP5X6X/375306-PBRSKN-852.jpg Blog v2 - The Language of Rare - Make it stand out Image by Freepik https://www.knowhealth.tech/blog-v2/sami-b96xk monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685757-UEW76D60J1S3BCYM8S5E/IMG_7506%2B%25281%2529.jpg Blog v2 - Organization Spotlight: SAMi - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685760-HGH0SV991A0Z464IS5LK/SAMi-1_First%2BSAMi.jpeg Blog v2 - Organization Spotlight: SAMi - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685751-M9SS842TL5SUNU7Z0I4F/KR_BLOG_SPOTLIGHTS.png Blog v2 - Organization Spotlight: SAMi - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685754-5KMWZLILIS0B436M9LUW/Untitled%2Bdesign%2B%252828%2529.jpg Blog v2 - Organization Spotlight: SAMi - Make it stand out The Anderson Family https://www.knowhealth.tech/blog-v2/covid-19-and-myositis-z9sjt monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684342-GT5WS087LHL63NHPD8S9/chemist-researcher-doctor-wearing-ppe-equipment-prevent-infection-with-coronavirus-analyzing-virus-sample-using-microscope-working-medical-vaccine-chemistry-laboratory-medicine-concept.jpg Blog v2 - Understanding COVID-19 and Myositis: Key Insights into Muscle Inflammation and Pain - Make it stand out Researcher analyzing virus sample. 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Netflix's Stranger Things panel. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683541-DDR59DQE5ITPRTC26JM6/keala-settle.jpg Blog v2 - Famously Rare: Celebrities Diagnosed With Rare Diseases Keala Settle, American actress and singer https://www.knowhealth.tech/blog-v2/healthy-for-the-holidays-klkkl monthly 0.5 2025-01-24 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684727-5MARD58L4KKSMWY6PT1D/freestocks-5UWVdeEAE3E-unsplash.jpg Blog v2 - Healthy for the Holidays - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/but-mama-why-cjh26 monthly 0.5 2025-01-15 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684139-KU5QY3BV3VYS9TBDXB55/IMG_9902.jpeg Blog v2 - But Mama, Why? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/umdf-wsje6 monthly 0.5 2025-01-22 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686092-K9BYX8YB9W2XI2QUU848/united_mitochondrial_foundation_logo Blog v2 - Organization Spotlight: The United Mitochondrial Disease Foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/spotlight-on-safe-harbor-5md6t monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685841-G4HBG72YRD1A567RAHG8/Safe+Harbor+Logo Blog v2 - Organization Spotlight: Safe Harbor, a podcast for parents and families of children with disabilities - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/providing-a-medical-home-bh4s7 monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685631-3AQMPV7I6P70U04LY61S/2.png Blog v2 - Providing a Medical Home - Make it stand out Jessica Duis, MD, Pediatric Geneticist https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685634-TOO6MIWYJCOO144058TG/unnamed.jpg Blog v2 - Providing a Medical Home - Make it stand out Dr. Duis and her team https://www.knowhealth.tech/blog-v2/tips-for-managing-pv-gkcxb monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686026-O7AFUU7XSQ6YKTXAQOAO/b7d8ce8c-3a27-9d9f-bdec-f6cbe17df9d4.jpeg Blog v2 - Tips for Managing a Rare Blistering Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685982-G71DU2JULSAI0O9F9JVZ/c6f5d4e4-21f0-3636-2a08-5d2f121039e7.jpeg Blog v2 - Tips for Managing a Rare Blistering Disease https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686005-GIPB9144LMLDFS56XUCZ/b22e6742-0288-1504-b9f5-b35ddfba3683.jpeg Blog v2 - Tips for Managing a Rare Blistering Disease https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685992-6BO38MC5Z0MVTP1HVN14/39b522d7-a273-61cc-4859-b02f7287bf00.jpeg Blog v2 - Tips for Managing a Rare Blistering Disease https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685998-9LYIEKS2UA764AHSJCYC/c9521273-9d29-3550-256e-570eae45db7d.jpeg Blog v2 - Tips for Managing a Rare Blistering Disease https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686016-CO5JSV9Z8576FCQGODVE/c6f5d4e4-21f0-3636-2a08-5d2f121039e7.jpeg Blog v2 - Tips for Managing a Rare Blistering Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686019-IR122DQ5CUNBDCL2Z7QK/b22e6742-0288-1504-b9f5-b35ddfba3683.jpeg Blog v2 - Tips for Managing a Rare Blistering Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686022-9JI90LB726DJ1GQVBCC2/39b522d7-a273-61cc-4859-b02f7287bf00.jpeg Blog v2 - Tips for Managing a Rare Blistering Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686034-GGO07JRF5Q0L6OAD85HN/c9521273-9d29-3550-256e-570eae45db7d.jpeg Blog v2 - Tips for Managing a Rare Blistering Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/failure-to-thrive-j5dsf monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684599-XA11SURRMI91LDP0ZSFM/IMG_5442.jpg Blog v2 - Navigating 'Failure to Thrive': A Mother's Journey Through Diagnosis and Decision-Making - Make it stand out Alden at school, Oct 2022 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684602-5YX3HNW77EBXDV9JUNNQ/image4.jpg Blog v2 - Navigating 'Failure to Thrive': A Mother's Journey Through Diagnosis and Decision-Making - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684593-T00IR9N6TZC0GCFZLCAT/IMG_7421.jpg Blog v2 - Navigating 'Failure to Thrive': A Mother's Journey Through Diagnosis and Decision-Making - Make it stand out Alden’s 1st bday (before surgery) https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684596-A1BKLOOHRGZN3VZHVFZW/IMG_7533.jpg Blog v2 - Navigating 'Failure to Thrive': A Mother's Journey Through Diagnosis and Decision-Making - Make it stand out Alden, post-surgery (morphine snuggles) https://www.knowhealth.tech/blog-v2/embrace-your-rare-truth-pm6w7 monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684553-4V4ABBZZXBIFHUKFQMZ3/20220816_104342+%281%29.jpg Blog v2 - Embrace your Rare Truth: Becky's Rare Tip on Finding the Right Support https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684547-ZOR7XLC7WS2F3MJ43SJH/Becky+Tilley_new+photo.jpg Blog v2 - Embrace your Rare Truth: Becky's Rare Tip on Finding the Right Support https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684540-KK2B0G78XTLVNEI22O62/20220829_140736.jpg Blog v2 - Embrace your Rare Truth: Becky's Rare Tip on Finding the Right Support https://www.knowhealth.tech/blog-v2/becky-tilley-7byty monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683906-7AP0Y22ZB0G265WFXJHS/TheTilleyfamilyphotoshootFebruary2022-267.jpg Blog v2 - Changemaker in Rare: Becky Tilley - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683903-JBQCN0DRZO8CFP0ARW1E/11.png Blog v2 - Changemaker in Rare: Becky Tilley - Make it stand out Becky Tilley, Rare Woman, Mama, Writer, Author and Rare Disease Advocate living with Koolen de-Vries syndrome. https://www.knowhealth.tech/blog-v2/a-tiger-moms-guide-for-sudden-hospitalization-for-a-child-with-a-rare-disease-2x5k5 monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683760-Q9KI2PU05UOEW07ISP4H/camilo-jimenez-vGu08RYjO-s-unsplash.jpg Blog v2 - A Tiger Mom’s Guide for Sudden Hospitalization for a Child with a Rare Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/familial-dysautonomia-foundation-6tl38 monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684610-GJ4JGZA2YSTDU0D9RKY9/5.png Blog v2 - Organization Spotlight: The Familial Dysautonomia Foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/the-healthy-sibling-xwdy9 monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685908-CLZ76SAO8YR72VYEG6MZ/IMG_3586.jpg Blog v2 - Supporting Healthy Siblings of Children with Medical Complexities: A Mother's Perspective - Make it stand out Siblings Hadley (on the left) and Alden in a gait trainer (on the right) playing together. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685911-JPYRZQVDUZ7L8FXR6ZX4/IMG_4354.jpg Blog v2 - Supporting Healthy Siblings of Children with Medical Complexities: A Mother's Perspective - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/targetcancer-foundations-5-tips-for-caregivers-yewnx monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685891-1T00JG0QV9M7O6W76L6C/depressed-young-woman-thinking-about-her-problems--UEKT4A6.jpg Blog v2 - TargetCancer Foundation’s 5 Tips for Caregivers - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/what-every-rare-cancer-patient-should-know-3ff82 monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686177-B1ZEPRM70Y8J71SBG7OE/istockphoto-1027587952-612x612.jpeg Blog v2 - What Every Rare Cancer Patient Should Know - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/targetcancer-foundation-xsxmt monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685882-KQF662GVCUVYXUCH8P40/6.png Blog v2 - Organization Spotlight: The TargetCancer Foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/traveling-different-n5ra8 monthly 0.5 2025-04-08 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686044-AH9MIB9DMU3CGL6MKBLW/cover%2Bimage%2Bfor%2BTD%2B%25282%2529.jpg Blog v2 - "Traveling Different," by Dawn M. Barclay: A New Book for Parents of the Anxious, the Inflexible, and the Neurodiverse - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/a-day-at-a-time-kinya-j96zt monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683743-PNGXJ0HUDBEJ6B82BVN0/IMG-20210911-WA0057.jpg Blog v2 - A Day at a Time: Our Journey with Rare Disease and Relentless Seizures - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683737-F91E5YSHWB4WYUM5IDMA/IMG_20200314_115455_2%2B%25281%2529.jpg Blog v2 - A Day at a Time: Our Journey with Rare Disease and Relentless Seizures - Make it stand out Carolyn Kinya (left), entrepreneur and rare mom, with her son Alvin (right), diagnosed with polymicrogyria (PMG). https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683740-8JNWO0JJXJ0E718CRBSA/IMG_20210126_092545.jpg Blog v2 - A Day at a Time: Our Journey with Rare Disease and Relentless Seizures - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/in-case-of-emergency-for-someone-with-pa-or-mma-rww4x monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684831-SBNI8S96SL8F3PA0QANI/2209.i121.017.S.m005.c13.isometric+injury+traumatologist.jpg Blog v2 - In Case of Emergency: Unleash the Power in Your Pocket - Make it stand out Image by macrovector on Freepik https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684844-ZUUDMBJ85NTMTFJLTES3/password%2Bin%2Bportal.jpg Blog v2 - In Case of Emergency: Unleash the Power in Your Pocket - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684841-0TBVUDTU5BY6V43Y6VQT/cropped%2Bart%2Bof%2Bgroup.jpg Blog v2 - In Case of Emergency: Unleash the Power in Your Pocket - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684834-20NEGYBPZXDOR3JOR3PA/MED%2BID%2Bart.png Blog v2 - In Case of Emergency: Unleash the Power in Your Pocket - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684837-YISP3DN0CJU8DAPSE1NQ/cropped%2Bart%2Bof%2Bdoctor.jpg Blog v2 - In Case of Emergency: Unleash the Power in Your Pocket - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/dna-today-propionic-and-methylmalonic-acidemia-4knw8 monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684423-E5KBCWK946A9RNK0CG39/Ep%252B188__.png Blog v2 - DNA Today Podcast: Propionic and Methylmalonic Acidemia with HemoShear Therapeutics - Make it stand out Bryan Kelly who lives with propionic acidemia. and Dr. Pat Horn, Chief Medical Officer at HemoShear. https://www.knowhealth.tech/blog-v2/protect-yourself-from-the-sun-if-you-have-bp-8zy7x monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685622-3F5UJ1W2YTT6X7EL0V2A/ultraviolet%2Bradiation%2Bhero%2Bimage.jpg Blog v2 - Protect Yourself From the Sun if You Have Bullous Pemphigoid (BP) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/genetic-testing-explained-dr-owens-harmh monthly 0.5 2025-01-15 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684689-TGNSL89QL3CC7HMC3YKB/8.png Blog v2 - Genetic Testing Explained: Dr. Joshua Owens is changing the way families think about genetics - Make it stand out Joshua Owens, MD, Clinical Geneticist https://www.knowhealth.tech/blog-v2/pa-foundation-587cn monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685457-UM59UHM1JSK20YLGO4XK/7.png Blog v2 - Organization Spotlight: The Propionic Acidemia Foundation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/i-see-you-dragon-mom-knhjp monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684791-S1ZD8LOKUHPX7STBBK1O/istockphoto-1159040738-612x612.jpeg Blog v2 - "I See You, Dragon Mom": A Poetic Tribute to Rare Disease Caregivers - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/strive-to-thrive-not-just-survive-3kh89 monthly 0.5 2025-01-14 https://www.knowhealth.tech/blog-v2/share-your-rare-bryan-kelly-xzk7p monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685791-0M4NOAM0YAA7MQ042CN1/unnamed-2.jpg Blog v2 - Share Your Rare: Bryan Kelly https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685778-U4HSAPYCPCS50N25IYRO/unnamed-3.jpg Blog v2 - Share Your Rare: Bryan Kelly https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685797-L0VV0ZXKI39KWZ29KKR2/unnamed-21.jpg Blog v2 - Share Your Rare: Bryan Kelly https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685784-XSEMXMSK84FVFGJEEUH4/unnamed.jpg Blog v2 - Share Your Rare: Bryan Kelly https://www.knowhealth.tech/blog-v2/changemaker-in-rare-mcintyre-9jbcr monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684245-14XMZLN5WQQRZMMLX180/3.png Blog v2 - Changemaker in Rare: Anne-Marie McIntyre - Make it stand out Anne-Marie McIntyre, Board Certified Behavior Analyst https://www.knowhealth.tech/blog-v2/can-what-you-eat-trigger-bullous-pemphigoid-bl2rr monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684189-YJWPV16UEUJF8P34MU3X/foodMood-182175784_770x533-650x428.jpeg Blog v2 - Can What You Eat Trigger Bullous Pemphigoid, a Rare Skin Condition? - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/moving-mountains-desenches-b9w3z monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685176-AK62QK0M18T4ALVGJYLN/desmond.jpg Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans - Make it stand out Rare mom Samantha and her child snuggling https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685173-NB565LJI0ZD05QAPWAER/unnamed2.jpeg Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans - Make it stand out Samantha’s child, Desmond https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685264-Z6LMYWOPYZW7Z4A84H3D/Screen+Shot+2022-05-10+at+6.37.22+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685194-01HN27HP0YUFSN6PGETM/Screen+Shot+2022-05-10+at+6.37.32+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685211-NYSE1A630EUGPGA9BERJ/Screen+Shot+2022-05-10+at+6.37.43+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685187-RGGCWSCKRVNHDKCZOQYU/Screen+Shot+2022-05-10+at+6.37.52+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685238-GY9WEWA2IYLOU2QGJOTR/Screen+Shot+2022-05-10+at+6.38.00+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685230-YM51OGY6XAJDNMBGZGOD/Screen+Shot+2022-05-10+at+6.38.10+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685245-V4VMW48HY3X3RE6XEWEF/Screen+Shot+2022-05-10+at+6.38.21+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685200-S5OCRBKGW0R5FD76CU3N/Screen+Shot+2022-05-10+at+6.38.29+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685251-N0I9VV805UHSZ5KS4KIE/Screen+Shot+2022-05-10+at+6.38.37+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685258-2PFZ5L9RMW13MQBX8ATN/Screen+Shot+2022-05-10+at+6.38.46+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685223-NMOKPZXPTU2QVZOHM2LX/Screen+Shot+2022-05-10+at+6.38.58+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685217-V7HB45W1O5Z1B1EEO9XG/Screen+Shot+2022-05-10+at+6.39.12+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685206-LV3JBALZ1BWT4SJQWART/Screen+Shot+2022-05-10+at+6.39.20+AM.png Blog v2 - Moving Mountains: Advocating for My Son’s Individual Education and Health Plans https://www.knowhealth.tech/blog-v2/the-resiliency-toolbox-z8j9b monthly 0.5 2025-01-08 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685934-1ED50QLG2PETUAV0DV75/3.picture%2Bfor%2Bstory_uni_2.jpg Blog v2 - The Rare Resiliency Toolbox - Make it stand out Uni Neha, Rare Disease Advocate https://www.knowhealth.tech/blog-v2/5-things-to-pack-in-your-emotional-toolkit-77yhb monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683694-KG34HW0DJVNTQA73O9EU/mental-health-concept-vector.jpg Blog v2 - 5 Things to Pack in your Emotional Toolkit - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/dr-pushpa-narayanaswami-bjxt6 monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684449-FOVNLW338E2L224UN3EZ/10.png Blog v2 - Changemaker in Rare: Pushpa Narayanaswami - Make it stand out Dr. Pushpa Narayanaswami, Neurology Specialist https://www.knowhealth.tech/blog-v2/measuring-patient-reported-outcomes-in-fsgs-9jj6s monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685098-0OBQWXM4YZ392KXD72S2/4a12b3bbcc373ddfec456a5b6354c7fe%25402x.jpg Blog v2 - Research in Action: Measuring Patient-Reported Outcomes in FSGS - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/2021/2/14/health-history-visualization-tools-help-rare-patients-tell-complex-stories-nwxes monthly 0.5 2025-01-22 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683617-ZA2RIIILYUV6EODYE6S5/Health_History_Timeline.png Blog v2 - Katie McCurdy: How a Woman with MG Helps Rare Patients Tell Complex Stories An example of a patient health timeline https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683614-UJDIJ8FBG5R8YNDMQLE3/katiemccurdy_headshot_1.jpg Blog v2 - Katie McCurdy: How a Woman with MG Helps Rare Patients Tell Complex Stories https://www.knowhealth.tech/blog-v2/plunging-is-easy-raising-money-is-hard-w82lf monthly 0.5 2025-01-21 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685548-AKCELS2QYHW8HNT8OV0G/77948849-Money-Jar-Article-600x400%25281%2529.jpg Blog v2 - Plunging is Easy, Raising Money is Hard: Lessons to Help Other Rare Disease Fundraising Organizations - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/jeremy-e-lankford-j6y44 monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684881-F9IYIA2P2QHX72H1JMAY/9.png Blog v2 - Changemaker in Rare: Jeremy E. Lankford, M.D. - Make it stand out Jeremy E. Lankford, M.D., Pediatric Neurologist https://www.knowhealth.tech/blog-v2/mary-kay-koenig-rl9yj monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685083-KU2Z1KJ6W6BLYRTHLUDW/5.png Blog v2 - Changemaker in Rare: Mary Kay Koenig, M.D. - Make it stand out Mary Kay Koenig, M.D., Pediatric Neurologist https://www.knowhealth.tech/blog-v2/bob-coughlin-g898b monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683934-POQXC7JWEWVU2FC72MBR/Copy+of+Your+paragraph+text+%281%29.png Blog v2 - Bob Coughlin: Boldly Chasing Cures - Make it stand out Bob Coughlin, Managing Director JLL, former MassBio CEO, and Cystic Fibrosis Dad and Advocate, with his sons. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683937-BR01CEL06PZ5UA687N03/cffishing+%281%29+%281%29.jpg Blog v2 - Bob Coughlin: Boldly Chasing Cures - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/kimberly-chapman-65pxp monthly 0.5 2025-01-08 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684889-09QHJ60O80VTTWU6WT6M/7.png Blog v2 - Changemaker in Propionic and Methylmalonic Acidemia: Kimberly Chapman, MD, PhD - Make it stand out Dr. Kimberly Chapman, Medical Geneticist https://www.knowhealth.tech/blog-v2/a-rare-disease-true-crime-story-54dy9 monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683752-U7NOZPGSL4CBLOP0HRDQ/istockphoto-121586241-170667a.jpeg Blog v2 - A Rare Disease True Crime Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/a-case-for-more-laughter-p4x64 monthly 0.5 2025-01-15 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683720-FAFS1QT4427QJGONVC5F/IMG-8604%2B%25281%2529.jpg Blog v2 - A Case for More Laughter: Humor as a Part of Seriously Good Caretaking - Make it stand out 1, 2, 3, BLINK! https://www.knowhealth.tech/blog-v2/organic-acidemia-association-hjrsl monthly 0.5 2025-01-22 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685403-EU6EIWWE40CQ0QIINBV2/8.png Blog v2 - Organization Spotlight: The Organic Acidemia Association - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/effects-of-a-6-month-yoga-program-on-kidney-function-and-quality-of-life-9x95e monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684523-2TT2SA8R9FBECCW2TSHT/istockphoto-888019184-612x612.jpg Blog v2 - Effects of a 6-Month Yoga Program on Kidney Function and Quality of Life - Make it stand out Yoga outdoors at sunset https://www.knowhealth.tech/blog-v2/wendy-white-scy64 monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686169-YFYGS7J8W3IRN3QR3XBX/Copy+of+Your+paragraph+text+%282%29.png Blog v2 - Wendy White: Centering Patient Voices and Innovation in Rare Disease Care - Make it stand out Wendy White, member of Ceek Women's Health board and Advocate in the rare disease. https://www.knowhealth.tech/blog-v2/dna-today-reneo-pmm-tje5g monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684432-HVCCTDJUDAP63ZH84AGE/Website%252BPreviews%252BEp%252B150-200%252B%25287%2529.png Blog v2 - DNA Today Podcast: Mitochondrial Disorders with Alejandro Dorenbaum - Make it stand out Alejandro Dorenbaum, M.D., Chief Medical Officer of Reneo Pharmaceuticals https://www.knowhealth.tech/blog-v2/family-planning-yh592 monthly 0.5 2025-01-15 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684618-13KFOAJ5534YKE0YTNV3/bigstock-Adult-And-Children-Hands-Holdi-385519583-750x300.jpg Blog v2 - Navigating Family Planning After a Child's Rare Disease Diagnosis - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/confronting-racial-and-ethnic-disparities-in-rare-disease-care-2tssz monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684325-FVM2FVXAID7I1OSR5GFD/download%2B%25281%2529.jpg Blog v2 - Confronting Racial and Ethnic Disparities in Rare Disease Care - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/living-with-greig-cephalopolysyndactyly-syndrome-fbhm7 monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685033-RGK5RXLUQOGX3AA8O5QD/IMG_1155%2B%25282%2529.jpg Blog v2 - Living with Greig Cephalopolysyndactyly Syndrome - Make it stand out Jordynn, Amy’s daughter, living with GCPS https://www.knowhealth.tech/blog-v2/can-mind-body-exercises-help-with-igan-nbnry monthly 0.5 2025-04-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684164-P5KS86AV3N644A1AYF50/istockphoto-1157205177-612x612.jpg Blog v2 - Can Mind-Body Exercises Help with IgA Nephropathy? See What the Research Says - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/can-yoga-really-help-with-igan-apjk6 monthly 0.5 2025-05-01 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684213-AX3A1KO9010U0LIUOS76/istockphoto-1166417394-612x612.jpg Blog v2 - Can Yoga Really Help with IgAN? See What the Research Says - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/the-genesis-foundation-for-children-w2n2w monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685900-3D1IAIZFXREW87PNMPXI/9.png Blog v2 - Organization Spotlight: The Genesis Foundation for Children - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/living-with-fsgs-em5d5 monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685017-ZGQMB8GFRM5EIXOZ1K65/Johnathan+LaGrande-3.jpg Blog v2 - Living with FSGS - Make it stand out Johnathan Grande, FSGS Warrior https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685020-V0XXL2YLJUTKY2PBQECQ/football+player-cropped.jpg Blog v2 - Living with FSGS - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685023-PAZL01SY1RB4VI3N026S/blood+vials.png Blog v2 - Living with FSGS - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685026-B4P10R3HDNO7T0U8ZT09/close+up+of+hand-hold.png Blog v2 - Living with FSGS - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/gaining-control-with-gratitude-24lpj monthly 0.5 2025-01-15 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684665-OQ80A2YFNGDWVVLMWQ8K/24683338648_a02e9f2f1f_c.jpg Blog v2 - Gaining Control with Gratitude - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/four-things-to-know-about-rare-disease-patient-registries-krhcr monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684649-X40ZUR7HS2KXQW7DUZW5/patient-registration-1536x1024.jpg Blog v2 - Four Things to Know About Rare Disease Patient Registries - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/one-bad-take-a-daily-newspaper-misses-the-target-on-pre-natal-testing-g79d3 monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685393-SA7JKG45H8ADQZWIIQVQ/Capture.JPG Blog v2 - One Bad Take: A Daily Newspaper Misses the Target on Prenatal Testing - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/pmg-awareness-gh654 monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685556-80TES838IVUFXQC4G3HQ/10.png Blog v2 - Organization Spotlight: The PMG Awareness Organization - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/unleashing-the-power-of-self-compassion-4fed5 monthly 0.5 2025-01-15 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686110-5L5Z0QA1Q0A8585TW1X6/new-years-resolution-1024x768.jpeg Blog v2 - Unleashing the Power of Self-Compassion: A New Year’s Resolution to Suffer Less - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/rare-patient-voice-2eec8 monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685716-7PHWRH5LO0T9HK8HZEMD/11.png Blog v2 - Organization Spotlight: Rare Patient Voice - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/alagille-syndrome-alliance-ya3tn monthly 0.5 2025-01-27 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683821-UVW5R70G53LPWJLFC1Q3/12.png Blog v2 - Organization Spotlight: Alagille Syndrome Alliance - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/national-society-of-genetic-counselors-t2nt9 monthly 0.5 2025-01-24 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685308-2YP6X572TMANGZYYVT17/13.png Blog v2 - Organization Spotlight: The National Society of Genetic Counselors - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/5-ways-employers-can-support-rare-disease-caregivers-in-the-workplace-zr9b7 monthly 0.5 2025-01-20 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683703-VEZVZFBXLP0GFF428XI2/5f3a8f12e89ebf001f0452ca.jpg Blog v2 - 5 Ways Employers Can Support Rare Disease Caregivers in the Workplace - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/uthealth-ctpnd-ndgzt monthly 0.5 2025-01-17 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686129-RN4IYURXX39OVCSCAXTC/UTHealth+Logo.png Blog v2 - Organization Spotlight: University of Texas Center for the Treatment of Pediatric Neurodegenerative Disease - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686148-6HES5GKHJ07K9V9W75NP/Mary%252BKay%252BKoenig.jpg Blog v2 - Organization Spotlight: University of Texas Center for the Treatment of Pediatric Neurodegenerative Disease - Mary Kay Koenig, MD Read Bio https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686155-4GWRTWPT0HDI9K72HTZS/S_Nick_Russo.jpg Blog v2 - Organization Spotlight: University of Texas Center for the Treatment of Pediatric Neurodegenerative Disease - Sam N. Russo, MD Read Bio https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740686141-MNKGUKH6L564XR0IRYM6/Lankford-Jeremy.jpg Blog v2 - Organization Spotlight: University of Texas Center for the Treatment of Pediatric Neurodegenerative Disease - Jeremy Lankford, MD Read Bio https://www.knowhealth.tech/blog-v2/4-stages-of-caregiver-identity-w8bxb monthly 0.5 2025-01-14 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740683680-L019ZZFWV3MWAKGQL6VW/unsplash-image-bO6bmdLjWpI.jpg Blog v2 - Learning to Juggle it All as a Caregiver: The Four States of the Caregiver's Identity - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/cultivating-flexible-hope-ktfan monthly 0.5 2025-01-08 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684351-ITO0Y6466S2J5CDE8HWZ/Alden%2BMonroe.jpg Blog v2 - Cultivating Flexible Hope: A look at the emotional cycles in chronic illness - Cultivating Flexible Hope Alden taking his first independent steps in his gait trainer https://www.knowhealth.tech/blog-v2/rare-resiliency-intro-egddt monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685724-H1ZLNDCBWLBBMYTW3CO0/unsplash-image-5viuCBIXywA.jpg Blog v2 - Introducing Rare Resiliency: A column for parents of children with rare, serious, or chronic illness - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/pmm-new-treatment-zsbes monthly 0.5 2025-01-16 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685563-CXILQIKU486TOW78GLZ1/hans-reniers-lQGJCMY5qcM-unsplash.jpg Blog v2 - Primary Mitochondrial Myopathies: Researchers Explore New Pathways for Treatment - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/nac-spotlight-hln49 monthly 0.5 2025-01-23 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685291-EG7ZFT2PG9ZUFCLPJH96/15.png Blog v2 - Organization Spotlight: The National Alliance for Caregiving (NAC) - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/nac-and-global-genes-caregiverguide-dt5yb monthly 0.5 2025-01-02 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740685282-Q943EK49BMFY0LBM948A/NAC_RareCaregivers_Guidebook_FINAL.jpeg Blog v2 - NAC and Global Genes Publish New Guidebook for Caregivers of Children with Rare Illnesses - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.knowhealth.tech/blog-v2/booksforfamilies-y5f3r monthly 0.5 2025-04-08 https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684131-D5NLQ1MFUPYCV42MLKEA/IMG_1403.jpg Blog v2 - 10 Books for Families of Children with Rare Disease - Make it stand out Laura reading with her two children Alden and Hadley https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684100-4KWKBUSI4E1A1K912OI5/Breathe+Like+a+Bear.jpeg Blog v2 - 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10 Books for Families of Children with Rare Disease https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684063-VCC8U2Y7G17I6FY1OFHN/Lets-Go-Play-2.jpeg Blog v2 - 10 Books for Families of Children with Rare Disease https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684105-IW1CFUYKI1GFHD0FRD5A/Madeline+.jpeg Blog v2 - 10 Books for Families of Children with Rare Disease https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684118-52XKMR313YYP89HUMAM6/Prince+Noah+and+the+School+Pirates.jpeg Blog v2 - 10 Books for Families of Children with Rare Disease https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684081-FUCONTGYP583QKZE2BAE/bev+and+lil.gif Blog v2 - 10 Books for Families of Children with Rare Disease https://images.squarespace-cdn.com/content/v1/684aec659c41417beffbf655/1749740684128-QVH25C62IANZXF13YMIO/IMG_1397.jpg Blog v2 - 10 Books for Families of Children with Rare Disease - Make it stand out Here, Hadley, age 3.5, is reading “Let’s Go Play” all about her brother’s adaptive equipment. 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