Advocating and Advancing Research in NMOSD From a Patient Perspective: Sumaira Ahmed

WATCH TIME: 4 minutes

"I think knowledge is power for anyone, whether you're living with a rare disease or not. The more we know, the better equipped we are to navigate our life. Often, patients must be their own advocates when they have a rare disease that even local hospitals might not have extended knowledge about. The best way to advocate for oneself is having the right information, the right education and the right facts about what you have.”

The rare autoimmune diseases of myelin oligodendrocyte glycoprotein-associated disorder (MOGAD) and neuromyelitis optica spectrum disorder (NMOSD) both cause central nervous system demyelination, and serum IgG-MOG and anti-aquaporin-4 antibodies serve as biomarkers for these respective conditions.¹ Besides sharing common clinical features such as optic neuritis and myelitis, both also share similar challenges in the diagnostic process and drug development. Through the ups and downs of the field, patient advocacy groups are there to support patients with rare diseases and their families by providing resources and a sense of community.

The Sumaira Foundation recently launched a new initiative that highlights some of the most promising published research related to NMOSD and MOGAD with short summaries in patient-friendly plain language.3 Led by Clarinda Cerejo, TSF Ambassador of India, coordinators of the event carefully selected the research on the basis of their relevance to patients and their potential to transform patient care. On the webpage, the research is categorized by disease and subcategorized by topics, such as disease overview, diagnosis, treatment, quality of life, and long-term outcomes.

On the day the webpage launched, Sumaira Ahmed, the founder and executive director of TSF, sat down in an interview with NeurologyLive® to discuss how the initiative of patient-friendly summaries of research publications impacts the ability of individuals with rare diseases to advocate for themselves. She also talked about how her personal journey reflects the transformative advancements in NMOSD and MOGAD research and treatment options over the past decade. In addition, Ahmed spoke about the ways the success of the NMOSD and MOGAD communities can serve as a blueprint for other rare diseases lacking similar achievements.

Click here to view the patient-friendly research summaries.

REFERENCES
1. Agarwal A, Aliyar A, Rao S, Mahadevan A, Garg A, Srivastava A. NMOSD and MOGAD Dual Positivity: An Extremely Rare Phenomenon. Ann Indian Acad Neurol. 2022;25(6):1174-1176. doi:10.4103/aian.aian_591_22
2. Patterson AM, O'Boyle M, VanNoy GE, Dies KA. Emerging roles and opportunities for rare disease patient advocacy groups. Ther Adv Rare Dis. 2023;4:26330040231164425. Published 2023 Apr 24. doi:10.1177/26330040231164425
3. TSF Website Now Hosts Patient-Friendly Summaries of Research Publications. News Release. The Sumaira Foundation. Published January 26, 2024. Accessed January 31, 2024. https://www.sumairafoundation.org/tsf-website-now-hosts-patient-friendly-summaries-of-research-publications/