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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.

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

Children’s Tumor Foundation
The Children’s Tumor Foundation announced the initiation of a research program in gene-based therapeutic approaches for the treatment of neurofibromatosis type 1 (NF1). The initiative begins through a request for applications. Letters of intent due by November 9, 2018.
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
The National PKU Alliance released its 2019 Call for Research Proposals and Fellowships to continue their mission and advance PKU research. Research Grants fund pre-clinical, translational and clinical research projects that investigate all aspects of PKU.
More information here.

Tess Research Foundation
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) focused on understanding the disease mechanism and finding treatment options for the epileptic encephalopathy caused by mutations in the SLC13A5 gene. The last date for submitting the application is December 1.
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 >