The Neuromuscular Disease Foundation
Programs
Clinical Research Funding
CLINICAL RESEARCH: Since 2006 NDF has been proactively seeking and funding clinical research projects to help understand GNE Myopathy (HIBM) and to hopefully help find treatments and cures. NDF is a world leader in funding scientists, universities and laboratories, the results of which have proven instrumental in how new studies are built.GeographiesNot indicatedDatesJan 1, 2022 – Dec 31, 2022Source990No causes providedNo populations provided–$638KGNEM Outreach and Education
Outreach & Education: A significant part of NDF's mission is preventing and suppressing the symptoms of GNEM in patients through screening and public education. NDF values the importance of educating physicians about this rare disease. We focus on educating the public about carrier screening aids, particularly for those in populations with higher carrier rates.GeographiesNot indicatedDatesJan 1, 2022 – Dec 31, 2022Source990No causes providedNo populations provided–$143.7KPatient and Carrier Advocacy
Patient & Carrier Advocacy: NDF strives to create a two-way connection between patients and scientists in order to maximize patient understanding about the latest research and treatment options being developed; and for physicians, scientists, and pharmaceutical companies to gain a better perspective, not only about patients needs and experiences, but also about how this impacts families as well.GeographiesNot indicatedDatesJan 1, 2022 – Dec 31, 2022Source990No causes providedNo populations provided–$39.8K
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