NORD Rare Disease Grant Program

NORD Jayne Holtzer Research Grants provide seed grants to academic scientists for translational or clinical studies that further development of potential new diagnostics or treatments of rare diseases. The grants are competitive and international.

How It Works

Studies funded with the seed grants provide preliminary data on drugs, devices, or medical foods that researchers may then use to attract funding from government or industry sponsors to pursue further clinical studies. In at least 2 cases, these grants have resulted ultimately in FDA-approved treatments for patients.

How Grants Are Awarded

Awards are based solely on scientific merit, as determined by the NORD Medical Advisory Committee, rare disease medical experts who generously donate their time to help NORD provide this program on behalf of the rare disease patient community.

Our grand selection process follows those of the National Institutes of Health (NIH) and is unbiased and independent. Read the full research grant policy.

How Grants Are Funded

Grants are funded largely by patients and patient advocacy organizations. In many cases, they are the only source of funding for the study of specific rare diseases.

  • Donors may target their donations to research a specific disorder
  • A minimum of $35,000 is required to fund a grant
  • When this target amount is reached, we begin the process of issuing a request for research proposals
  • If the target amount is not reached within a specified time-period, the funds may be allocated to a related condition

Donate to a research fund

How the Program Was Named

Jayne Holtzer left her estate to research groups to find a cure for the diseases that took her and her husband’s lives. Jayne felt symptoms of myelofibrosis while she was helping her husband Mark Altemus in his fight against melanoma. A remarkable person full of fight and confidence, she fought hard to get a diagnosis and then searched for the latest breakthroughs. Mark died after a 10-year battle at the age of 47 and Jayne about 20 years later, far longer than the average life expectancy for a person with myelofibrosis. In death, she is still searching for the cures through programs like the seed research grants.