Mark Your Calendar for TSF's Atlanta Patient Day
An important event for NMOSD and MOGAD patients and caregivers.
The Sumaira Foundation presents the Patient Day for NMOSD & MOGAD in Atalanta, on July 21, 2024
For the rare disease community, in-person events provide valuable opportunities to share experiences, gain insights from top specialists, and strengthen support networks. Events can also foster a sense of solidarity and hope by bringing awareness to efforts to improve the lives of those impacted by rare diseases.
This summer, NMOSD and MOGAD patients, caregivers, clinicians, nurses, researchers, and advocates are invited to join The Sumaira Foundation at Emory Brain Health Center for TSF's Atlanta Patient Day. This event, developed in collaboration with Dr. Grace Gombolay & Dr. Spencer Hutto (Emory) and Dr. Mitzi Joi Williams (Joi Life Wellness), is free of charge and dedicated to education, community, and fun for those affected by NMOSD and MOGAD.
Participants will be able to connect with local patients, caregivers, and medical professionals and engage directly with experts, asking real-time questions about symptom management, treatments, therapies, and co-morbidities. Additionally, there will be updates on the latest research and findings around MOGAD and NMOSD from leading local experts.
Event Information and Dates
TSF’s Atlanta Patient Day will take place on:
Sunday, July 21, 2024, in Atlanta, Georgia (registration info here).
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