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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]

CACNA1A Foundation
The CACNA1A Foundation has announced a seed grant of $50,000 for a research project that shows promise for contributing to the scientific advancement and understanding of CACNA1A variants. We are specifically interested in research that: May identify novel therapies to improve the quality of life of individuals with CACNA1A; that investigates an aspect of CACNA1A that is less well researched or is a promising new area for research and could make a significant contribution to the understanding of CACNA1A or its treatment; and/or that produces preliminary data that would facilitate broader or more substantial long- term funding from the NIH, research centers, foundations, or pharmaceutical companies in the future. Application deadline: February 1, 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.


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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