OVERVIEW: The National Organization for Rare Disorders supports individual academic scientists as well as organizations studying rare diseases, such as Alveolar Capillary Dysplasia, Dubowitz Syndrome, Tarlov Cysty Disease or one of the nearly 7,000 so-called “orphan” diseases.
IP TAKE: NORD is not a federal grant program, however, it does advocate on behalf of the U.S. Food and Drug Administration (FDA) and the National Institutes of Health (NIH).
PROFILE: In 1983, an informal coalition of rare disease organizations became the National Organization for Rare Disorders. Today, it works to provide services and resources for “patients and their families, rare disease patient organizations, medical professionals, and those seeking to develop new diagnostics and treatments.” These services include patient advocacy, patient and professional education, patient assistance programs, mentorship, research support, and international partnerships.
NORD’s Research Grant Program generally provides seed grants to “academic scientists for translational or clinical studies related to development of potential new diagnostics or treatments for rare disease.” The foundation prioritizes research that “will ultimately lead to new diagnostics, treatments, and/or cures for rare diseases,” and prefers to fund the study of diseases that do not typically receive substantial funding. Every year NORD releases a Request for Proposals that specifies which diseases it has raised funds to research. Researchers seeking support must target one of these disorders specifically. Previous diseases include alveolar capillary dysplasia, appendix cancer, autoimmune polyglandular syndrome, malonic aciduria, and stiff person syndrome.
The organization does not reveal exact amounts of its grants, but it does offer a bit of information by way of its minimum required donations: NORD will not begin its request for RFPs until it has a minimum of $35,000 to fund one disease-specific research grant. The organization has calculated that this is the minimum amount necessary to begin research. To get an idea of research NORD has funded in the past, you can browse through its Research Grant Recipients page.
RFPs began with a preliminary abstract proposal which are typically due in July. Remaining deadlines vary from year to year and are announced on NORD’s website. Final grant decisions were made by NORDs medical advisory board, which includes professors, doctors and nurses.
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