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

NORD is happy to announce six available grants in four diseases.

  • Two 2-year grants of up to $50,000 per grant, for scientific research studies and/or clinical research studies related to pseudomyxoma peritonei (PMP). See full RFP and abstract proposal template here.
  • One 2-year grant of up to $100,000 for scientific research studies and/or clinical research studies related to Autoimmune Polyglandular Syndrome Type 1 (APS Type 1). See full RFP and abstract proposal template here.
  • One 1-year grant of up to $30,000 for a clinical research study related to the diagnosis and/or treatment of Primary Orthostatic Tremor (POT). See full RFP and abstract proposal template here.
  • Two 2-year-grants of up to $93,500 per grant, for a scientific and/or clinical research study related to Alveolar Capillary Dysplasia with Misalignment of Pulmonary Veins (ACDMPV). See full RFP and abstract proposal template here.


Schedule for 2014 Grant Cycle:

July 10th, 2014 Deadline for preliminary abstract proposal submission.
Mid-August NORD Medical Advisory Committee invites finalists to submit detailed proposals.
October 5th, 2014 Deadline for full proposals from finalists.
Mid-December Winners selected and awards announced.





NORD’s member organizations are invited to post information on this page about their research funding opportunities. Researchers who have questions about programs listed below should contact the organization sponsoring the RFP.

NORD member organizations may submit funding opportunities for this page here.

Alpha-1 Foundation

Contact Name: David Fernandez,

Disease Name: Alpha-1 Antitrypsin Deficiency
The Alpha-1 Foundation and the American Lung Association are seeking proposals for a research grant to support clinical, laboratory, epidemiological or other research aimed at developing novel medical treatments, advancing current treatment options or finding a cure for Alpha-1. Applications are due by March 4, 2015. View application

Alport Syndrome Foundation (ASF)

Contact Name: Sharon Lagas,

Disease Name: Alport Syndrome
For the third year, the ASF, the Pedersen Family, and the Kidney Foundation of Canada will provide funding for basic science and clinical research that will enhance the understanding and treatment of Alport syndrome. The Research Funding Program anticipates awarding two $100,000 research projects and applications are due March 23, 2015. More.

Children’s Cardiomyopathy Foundation (CFF)

Contact Name: Lisa Yue,


Disease Name: Pediatric Cardiomyopathy (Dilated, Hypertrophic, Restrictive or Arrhythmogenic)

The CCF Research Grant Program has funding available for investigators to  test initial hypotheses and collect preliminary data for basic science, clinical, population/epidemiologic and translation research on cardiomyopathies affecting children aged 18 years and younger. Letters of intent are due June 12. More.

Lymphangiomatosis & Gorham’s Disease Alliance (LGDA)

Contact Name: Jack Kelly- or Nupur Garg, PhD-

Disease Name: Generalized lymphatic anomaly (lymphangiomatosis) & Gorham-Stout Syndrome
Amount: There are no pre-determined figures governing these parameters.
Length of Study: The period of award and level of funding is unique to each funded project.
Link to Guidelines and Application: or

National Niemann-Pick Disease Foundation (NNPDF)

Contact Name: Beth Green,


Disease Name: Nlemann-Pick Disease

The NNPDF is inviting applications for research fellowships examining the biology of Niemann-Pick type C. Applications are due May 15. More.

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 >