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Requests for Proposals

The NORD Jayne Holtzer Rare Disease Research Grants Program provides seed-money grants to qualified investigators for scientific and/or clinical research. The hope is that these studies ultimately will lead to new diagnostics, treatments, and/or cures for rare diseases. NORD’s program provides grants for the study of diseases for which there are few other sources of funding. Grants are made possible through the generosity of allies in the rare disease community and supporters who have donated into NORD’s research fund.

Since the program’s launch in 1989, NORD grants have led to the development of two FDA-approved treatments and numerous peer-reviewed publications. More than 200 grants have been awarded representing over $9 million in approved funding.

IAMRARE™ Registry Program

To learn more about NORD’s IAMRARE™ Registry Program and the datasets available within the IAMRARE™ platform, visit:

Additional Funding

NORD’s member organizations are invited to share information on this page about their research funding opportunities. Researchers who have questions about programs listed below should contact the organization sponsoring the RFP. In order to have information posted on this page, please email [email protected]

AES Seed Grants
AES Seed Grants offer ‘seed’ funds to help enable established investigators pursue new and innovative directions in their labs. Applications are due Friday, September 24, 2021.
More information here.

AES Research and Training Workshop Grants
AES Research and Training Workshop Grants support scientific conferences and workshops that address timely and important topics in epilepsy research. Applications are due Friday, September 24, 2021.
More information here.

Lymphangiomatosis & Gorham’s Disease Alliance (LGDA)
LGDA has made available applications for funding for the study of Lymphangiomatosis and Gorham’s Disease. The period of award and level of funding is unique to each funded project, and depends wholly on the scope and requirements of each approach.
More information here.

Malan Syndrome Foundation
The Malan Syndrome Foundation is accepting research proposals for 1 to 2 years of funding; $30,000 per year. Malan syndrome is a rare, genetic neurodevelopmental disorder caused by de novo variants in the NFIX gene. Research investigators at all stages in their career are encouraged to apply.
More information here.

Coalition to Cure Calpain 3
Coalition to Cure Calpain 3 requests applications for research and translational projects related to calpain 3 and limb-girdle muscular dystrophy type 2A (LGMD2A, also called LGMDR1 Calpain 3-related). The goal of the RFA is to enable the development of therapeutic approaches for this disease. This opportunity is open to investigators from both US and non-US based academic and biopharmaceutical organizations. Letters of Intent are due by September 1, 2021, with full applications due by November 1, 2021.
More information here.

National Ataxia Foundation
National Ataxia Foundation invites you to submit a Letter of Intent for a NAF research grant. Grant types and funding vary by award type. NAF is committed to funding the best science relevant to hereditary and sporadic types of ataxia in both basic and translational research. LOI deadlines vary from September- October. More information here.

Uplifting Athletes
Uplifting Athletes is now accepting nominations from rare disease patient advocacy organizations for 2022 Young Investigator Grants! Selected young investigators will receive their grant awards at the 2022 Uplifting Athletes Young Investigator Draft presented by CSL Behring. More information here.

Requests for Proposals

Medical Advisors

All medical decisions guiding the NORD Research Grant Program are made by NORD’s Scientific and Medical Advisory Committee. View the committee >

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