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: The National Organization for Rare Disorders provides its grant recipients with what they refer to as seed money grants. These starter grants provide scientists the ability to further their research on orphan diseases -- in other words, diseases that afflict so few people that there is “…little commercial interest,” to fund development of new treatments. NORD grants also help scientists generate the initial research data they need to strengthen future applications for larger government or "commercial" grants, or sponsors.
Every year NORD announces which diseases it has raised funds to research. Researchers seeking support must target one of these disorders specifically. Your work doesn’t have to involve human trials; however, when it concludes, it must be translational.
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.
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.
To get an idea of research NORD has funded in the past, you can browse through its Research Grant Recipients page. The disorders it focuses on change yearly, so it's important to check back ever so often. Grantseekers are also encouraged to explore grant opportunities from its member organizations.