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Requests for Proposals

The NORD Research Grant 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.

Over the past thirty years, NORD grants have led to the development of two FDA-approved treatments and numerous peer-reviewed publications. More than 150 grants have been awarded representing over $8 million in approved funding since the program’s launch in 1989.

NORD Research Grants

NORD’s 2019 Rare Disease Research Grant Cycle is now closed. We are now accepting poster submissions for NORD’s 2019 Rare Summit. We encourage all interested researchers to review the poster submission guidelines and apply by the August 2 deadline.

  • Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins (ACD/MPV) – One grant of up to $50,000 U.S. Download RFP
  • Appendix Cancer and Pseudomyxoma Peritonei (PMP) – Two grants of up to a combined total of $100,000 U.S. Download RFP
  • Autoimmune Polyglandular Syndrome Type 1 (APS-1) – One grant of up to $100,000 U.S. Download RFP
  • Biliary Atresia – Two grants of up to a combined total of $190,500 U.S. Download RFP
  • Malonic Aciduria- One grant of up to $52,000 U.S. Download RFP
  • Neuroendocrine Cell Hyperplasia of Infancy (NEHI) – One grant of up to $30,000 U.S. Download RFP
  • New-Onset Refractory Status Epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES) – Two grants of up to a combined total of $100,000 U.S. Download RFP
  • Primary Orthostatic Tremor – One grant of up to $42,500 U.S. Download RFP

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

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.

Neuroendocrine Tumor Research Foundation
The Neuroendocrine Tumor Research Foundation (NETRF) has announced a new round of research grant opportunities. NETRF welcomes proposals addressing gastrointestinal and pancreatic neuroendocrine tumors (NETs) and continues to have a special interest in lung NETs. Grants are open to researchers anywhere in the world.
More information here.

VHL Alliance
The VHL Alliance is pleased to announce a call for applications for research grant support on topics relevant to von Hippel-Lindau disease. Projects should further the understanding of VHL disease. Letters of intent should be emailed to no later than July 15.
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 >