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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 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 and 2017 applications will become available soon.

View the recipients of the 2016 research grants 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 email

Aplastic Anemia and MDS International Foundation (AAMDSIF)
AAMDSIF has announced that applications are open for 2017 research grants. The deadline for application is February 28, 2017.
More information here.

Galactosemia Foundation
The Galactosemia Foundation encourages and funds research that will increase understanding of galactosemia and/or help families living with galactosemia. Proposals are due Jan 31, 2017 and decisions are planned to be announced April 15, 2017.
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.

Hyper IgM Foundation
The Hyper IgM Foundation has announced the availability of seed grant funding for researchers interested in the advancement of a cure for Hyper IgM Syndrome.  The intent of these grants is to accelerate scientific work focused on improving the treatment, quality of life, and long-term outlook for patients with Hyper IgM. Grant applications will be considered twice per year with submission deadlines of April 30th, 2017 and September 30th, 2017.
More information here.

International Pemphigus & Pemphigoid Foundation
IPPF has made available a seed grant program to encourage and support patient oriented research on pemphigus and pemphigoid. The program is open to applicants currently based in the U.S. and will consist of one-year grants. Letters of intent are due February 28, 2017.
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.

The MSA Coalition
The Multiple System Atrophy Coalition’s 2017 call for Multiple System Atrophy research proposals is now open. Seed grants of up to $50,000 each are available.  The deadline for pre-proposals is March 6, 2017. All applications must be submitted to The MSA Coalition via email.
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.

Tess Research Foundation
The Tess Research Foundation has announced that applications are invited for the TESS Research Foundation Grant for research on SLC13A5 Deficiency, a citrate transporter disorder. The purpose of this grant is to fund research (Up to maximum 100,000 USD) focused on understanding the disease mechanism and finding treatment options for the epileptic encephalopathy caused by mutations in the SLC13A5 gene. The deadline for submitting the application is April 4, 2017.
More information here.

The Soft Bones Foundation
The Soft Bones Foundation has extended the application deadline to April 15, 2017 for a “seed grant of $25,000 for basic or clinical research directly related to hypophosphatasia.  Proposals are welcome from faculty members at a private research center or university. Applications from senior post-doctoral trainees or research associates are acceptable provided that the individual and his/her mentor have a track record of commitment to research relevant to HPP.
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 >