Request 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

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, click here.

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 contact NORD.

Foundation Fighting Blindness
Foundation Fighting Blindness is launching 7 funding opportunities this Fall! The Grants and Awards Programs support basic, laboratory-based early translational, clinical studies, and pre-clinical research applicable to a wide range of inherited retinal degenerative diseases annually. The Foundation encourages individuals and teams from all scientific disciplines that have ideas geared toward eliminating inherited retinal degenerative diseases to apply to a grant or award program. Individuals from underrepresented racial, ethnic and gender groups, as well as individuals with disabilities, are always encouraged to apply. Learn more.

HCU Network America 

HCU Network America and HCU Network Australia are currently calling for Expressions of Interest (EOI) for new therapies to treat homocystinuria due to Severe Methylenetetrahydrofolate Reductase (MTHFR) by exploring novel mechanisms to obtain proof of concept to enable the progression of clinical trials. Research Grant awards are up to $40,000 USD though exceptional applications may be funded at a higher amount if the budget request is justified. Research Grants support projects to produce proof of concept that would facilitate more substantial funding from federal agencies, foundations, or corporations. EOI deadline for submission is May 31, 2023. Learn more.

KBG Syndrome Foundation
The KBG Syndrome Foundation is honored to announce the launch of its Seed Funding Program. This program drives early-stage funding for doctors and researchers who are engaged in or developing a protocol to uncover and treat mutations in ANKRD11 and/or KBG syndrome. It is the first funding program established by a patient-led organization for KBG. For the fiscal years 2022 and 2023, the Foundation will award up to three grants of up to $10,000 each year. Application is open to certified researchers with demonstrated interest in and capability to advance the understanding and treatment of KBG Syndrome. Applications for the 2023 round are due on April 30, 2023. Learn more.

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.