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Requests for Proposals

The NORD Research Grant Program provides seed-money grants to academic scientists for scientific and/or clinical research. The hope is that these studies will ultimately 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 by allies in the rare disease community that have generously donated into NORD’s research fund. Each year, Lundbeck raises awareness and support, in partnership with NORD, through their annual Raise Your Hand Campaign, which runs during the month of February to support Rare Disease Day. We are proud to acknowledge Lundbeck’s charitable donation for NORD’s 2018 Rare Disease Research Grant cycle.


NORD Research Grants

NORD’s Rare Disease Research Grant Program is accepting proposals for the study of the following seven rare diseases. All U.S. and international researchers interested in studying one or more of these diseases are encouraged to apply by Monday, July 16, 2018.

  • Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins (ACD/MPV) – One (1) grant of up to $50,000 U.S. for scientific and/or clinical research studies related to Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins (ACD/MPV). Download RFP.
  • Appendix Cancer and Pseudomyxoma Peritonei (PMP) – Two (2) grants of up to $50,000 U.S. for scientific and/or clinical research studies related to Appendix Cancer and/or Pseudomyxoma Peritonei (PMP). Download RFP.
  • Familial Hypercholesterolemia – One (1) grant of up to $50,000 U.S. for scientific and/or clinical research studies related to Familial Hypercholesterolemia. Download RFP.
  • Malonic Aciduria – One (1) grant of up to $80,000 U.S. for scientific and/or clinical research studies related to Familial Hypercholesterolemia. Download RFP.
  • New-Onset Refractory Status Epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES) – Grant(s) of up to $100,000 U.S. for scientific research studies related to New-Onset Refractory Status Epilepticus (NORSE) and/or Febrile Infection-Related Epilepsy Syndrome (FIRES). Download RFP.
  • PACS1-Related Syndrome (Schuurs-Hoeijmakers Syndrome) – One (1) grant of up to $45,000 U.S. for scientific and/or clinical research studies related to PACS1-Related Syndrome (Schuurs-Hoeijmakers Syndrome). Download RFP.
  • Primary Orthostatic Tremor – One (1) grant of up to $41,000 U.S. for scientific and/or clinical research studies related to Primary Orthostatic Tremor. 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 membership@rarediseases.org

American Partnership for Eosinophilic Disorders (APFED)
APFED is now accepting applications for three 2018 HOPE Pilot Grants. APFED’s HOPE Pilot Grant program was established to allow investigators from a variety of disciplines to initiate new projects relevant to eosinophil-associated diseases (EADs).
More information here.

Children’s Cardiomyopathy Foundation
The Children’s Cardiomyopathy Foundation offers a research grant program for studies focused on all forms of cardiomyopathy in children. Letters of intent are due June 13, 2018. Learn more about eligibility and the application process.
More information here.

Hydrocephalus Association
The Hydrocephalus Association is soliciting applications for research on postinfectious and posthemorrhagic hydrocephalus. The goal of this initiative is to provide seed funding for bold and innovative research with the potential to transform the field of hydrocephalus through the understanding of disease mechanisms and the development of novel therapies and treatment approaches. Please note, you need to be a HANDS member to apply. Membership is free. Sign up here.
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.

The MDS Foundation, Inc.
The MDS Foundation, Inc.’s Young Investigator Grant provides an investigator, aged 40 years or less, the opportunity to initiate, continue or complete a project that focuses on either basic or clinical management into the causation, epidemiology, molecular biology, cytogenetics, morphology, prognosis and treatment of the Myelodysplastic Syndromes.
More information here.

Neuroendocrine Tumor Research Foundation
NETRF has announced the availability of 2017 grant funding for the study of neuroendocrine tumors. The organization is inviting competitive Letters of Intent (LOIs) that outline research with the potential to transform our understanding of NETs and/or lead to improved treatments and diagnostics for patients.
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 >