To Top

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 provided through the NORD program are made possible by donations from individuals and organizations to restricted research funds at NORD.

NORD 2016 Research Grants

NORD encourages all U.S. and international researchers interested in studying these diseases to consider applying. The 2016 NORD RFP application deadline has passed. Grant recipients will be announced at the end of February 2017 and listed here.

  • Alveolar Capillary Dysplasia with Misalignment of the Pulmonary Veins – One (1) grant of up to $50,000, for scientific and/or clinical research studies related to Alveolar Capillary Dysplasia (ACD/MPV).
  • Appendix Cancer and Pseudomyxoma Peritonei – Two (2) grants of up to $50,000 for scientific and/or clinical research studies related to Appendix Cancer and/or Pseudomyxoma Peritonei (PMP). 
  • Autoimmune Polyglandular Syndrome Type 1 – One (1) grant of up to $100,000 for scientific and/or clinical research studies related to Autoimmune Polyglandular Syndrome Type 1 (APS Type 1). 
  • Homocystinuria – One (1) grant of up to $30,000 for scientific and/or clinical research studies related to Homocystinuria due to Cystathionine Beta-Synthase Deficiency. 
  • Malonic Aciduria – One (1) grant of up to $30,000 for scientific and/or clinical research studies related to Malonic Aciduria. 
  • Stiff Person Syndrome – One (1) grant of up to $30,000 for scientific and/or clinical research studies related to Stiff Person Syndrome. 

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

Million Dollar Bike Ride Grant Program
Patient organizations including several NORD members and the Million Dollar Bike Ride Program at the University of Pennsylvania Orphan Disease Center have made possible 30 research for the study of various rare diseases. September 16 is the deadline for letters of intent. The diseases to be studied are: adult polyglucosan body disease, ataxia-telangiectasia, Castleman disease, CFTR nonsense mutations, congenital hyperinsulinism, congenital muscular dystrophy, CRB1 degenerative retinal disease, nonsense mutations in cystic fibrosis, dyskeratosis congenita & telomere biology disorder, fibrous dysplasia/McCune Albright syndrome, generalized lymphatic anomaly and Gorham-Stout disease, Glut 1 deficiency, LAM, mucolipidosis type 4, mucopolysaccharidoses, Niemann Pick type C, Pitt Hopkins syndrome, RASopathies, Snyder-Robinson syndrome, and Tay-Sachs disease.
More information here

American Partnership for Eosinophilic Disorders (APFED)
APFED’s 2017 HOPE Pilot Grant award is now accepting applications. Letters of intent are due by Oct. 28 and final applications are due by Nov. 30.
More information here

American Brain Tumor Association
The American Brain Tumor Association (ABTA) has several research grant funding opportunities available. This grant cycle opens August 24, 2016 and closes on October 5, 2016.
More information here.

Benign Essential Blepharospasm Research Foundation (BEBRF)
The BEBRF has issued a request for blepharospasm/meige research proposals and the application deadline is Aug. 31.
More information here

Children’s Cardiomyopathy Foundation
Request for Research Applications on Pediatric Cardiomyopathy
The Children’s Cardiomyopathy Foundation (CCF) invites investigators to submit research proposals for basic, clinical, population/epidemiologic or translational studies focused on primary cardiomyopathy in children under the age of 18 years. CCF’s grant program is designed to provide seed funding to investigators for testing their scientific hypotheses and for collecting preliminary data to secure long-term funding from the National Institutes of Health and/or other major granting institutions.
More information here.

The Cholangiocarcinoma Foundation
The Cholangiocarcinoma Foundation (CCF) invites investigators to submit research proposals for basic, translational and clinical studies in cholangiocarcinoma. Applications are due by Oct. 1.
More information here.

Hydrocephalus Association
The Hydrocephalus Association is soliciting applications for research on 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. This award is not intended to support human trials nor is it intended to support the development of new animal, ex vivo, or in vitro models of hydrocephalus for the purpose of future research.The award provides short term seed funding for up to 12 months. Proposals may be submitted for actual costs at one of two funding levels, $25,000 or $50,000.
Any questions can be referred to HA’s Director of Research Programs, Jenna Koschnitzky, PhD at
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.

National PKU Alliance (NPKUA)
The NPKUA is seeking post-doctoral fellowship applications for research that will lead to new therapy discoveries and a cure. Full proposals are due by Nov. 1.
More information here.

Pancreatic Cancer Action Network 
The Pancreatic Cancer Action Network (PANCAN) is now accepting applications for pancreatic cancer research grant funding opportunities. Letters of intent are due by Oct. 4 and the application deadline is Nov. 15.
More information here.

TagetCancer Foundation
TargetCancer Foundation is announcing their first round of rare cancer research grant funding for 2016: $200,000 in new grants supporting innovative rare cancer research, as well as a new program supporting patients facing cholangiocarcinoma.
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 >