Organization Spotlight: The Organic Acidemia Association
Mission Statement
We are a non-profit organization whose mission is to empower families and health care professionals with knowledge in organic acidemia metabolic disorders. We support early intervention through expanded newborn screening, solicit contributions, and distribute funding that supports research toward improved treatment and eventual cures in the areas of organic acid disorders.
OAA Patient Registry
The Organic Acidemia Association has launched the largest-ever study of rare organic acid disorders to advance research, improve treatment, and discover a cure. The OAA Patient Registry consists of electronic surveys that collect information about the patient's experience and disease progression. Patients, or their caregivers or guardians, can enter information from anywhere in the world. The data are anonymous and stored securely in an online portal called a registry.
To learn more about registries for patients with organic acid disorders, visit: https://www.oaanews.org/oaa-patient-registry.htm.
Nutrition and Recipes
OAA has a large section of articles and resources on dietary and nutritional guidelines:
https://www.oaanews.org/nutrition--recipies.html.
Check out a new Metabolic Balancer app to replace the DietWell App and to help people living with Metabolic disorders feel balanced. It will make individuals feel better with key functionality to create recipes, track phe and protein intake, share information with friends, learn about Cambrooke products, and much more. In addition to all the features and user interface enhancements, with this new release, we have rearranged recipes, meal ingredients, food items, and their classification, to make the new app more relevant, efficient, and organized.
Newborn Screening
Access newborn screening websites and videos, oral testimony, articles by Kathy Stagni, and the National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups: https://www.oaanews.org/newborn-screening.html.
Contact Information
Organic Acidemia Association
9040 Duluth Street
Golden Valley, MN 55427
Phone number: 763-559-1797 (Central Time)
Email: mkstagni@gmail.com
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