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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.

Latest Research Grants

Autoimmune Polyglandular Syndrome Type 1 (APS-1) | Autoimmune Polyendocrinopathy Candidiasis Ectodermal Dystrophy (APECED)

NORD, with funding from the patient member organization, the APS Type 1 Foundation, is accepting applications for one grant, $50,000 US, for scientific and/or clinical research studies related to Autoimmune Polyglandular Syndrome Type 1 (APS-1), also known as autoimmune polyendocrinopathy candidiasis and ectodermal dystrophy (APECED).

More information here.

Levy-Yeboa Syndrome (LYS), an STXBP3-associated disease

NORD, with fundraising by the Maxwell Family is accepting applications for one grant, up to $40,000 US, for scientific and/or clinical research studies related to Levy-Yeboa syndrome (LYS).

More information here.

Megacystis Microcolon Intestinal Hypoperistalsis Syndrome | (MMIHS), An ACTG2-associated disease

NORD, with funding from the MMIHS Foundation, is accepting applications for one grant, $30,000 US per grant, for scientific and/or clinical research studies related to megacystis microcolon intestinal hypoperistalsis syndrome.

More information here.

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]

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.

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 2023 Young Investigator Draft! The Young Investigator Draft grants fund collaborative basic bench research in order to positively impact treatments and potential cures for the entire rare disease community. The 2023 Young Investigator Grants Request for Application (RFA) will be open from August 1, 2022, through October 14, 2022. 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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