The National Organization for Rare Disorders (NORD®), the leading national nonprofit serving more than 30 million Americans with rare diseases, announced five new requests for proposals (RFPs) totaling $245,000 in seed grant funding. The grants are part of NORD’s Rare Disease Research Grant Program, which provides essential early-stage funding to jumpstart promising investigations and accelerate the development of potential treatments for rare diseases where therapeutic options are limited or non-existent.
These grants were funded by the Appendix Cancer/Pseudomyxoma Peritonei Research Foundation, a NORD Member patient organization; the Peutz-Jeghers Syndrome community; the Epidermodysplasia Verruciformis community; the Pseudomyxoma Peritonei community; and Dylan’s Rare Chromosome Dream Team and the Partial Trisomy 6q community.
This cycle, NORD is seeking proposals for the following rare diseases:
- Chromosome 6, Partial Trisomy 6q – An extremely rare chromosomal disorder in which a portion of the 6th chromosome (6q) is present three times (trisomy) rather than twice in cells of the body.
- Epidermodysplasia Verruciformis (EV) – A rare genetic genodermatosis characterized by a compromised immunologic ability to defend against and eradicate certain types of human papillomavirus (HPV) leading to polymorphous cutaneous lesions and high risk of developing non-melanoma skin cancer.
- Peutz-Jeghers Syndrome (PJS) – A rare genetic condition characterized by the development of benign polyps in the stomach and the intestines (gastrointestinal tract) and by distinctive dark spots on the skin and mucous membranes.
- Pseudomyxoma Peritonei (PMP) – A rare, malignant growth characterized by the progressive accumulation of mucus-secreting (mucinous) tumor cells within the abdomen and pelvis.
- Appendix Cancer/Pseudomyxoma Peritonei (ACPMP) – An extremely rare cancer of the appendix that typically starts in the appendix and frequently spreads to the abdominal cavity which can lead to either a build-up of mucinous fluid in the abdomen known as pseudomyxoma peritonei or a condition referred to as peritoneal carcinomatosis.
Recipients will be awarded to qualified researchers to initiate small scientific research studies or clinical trials with the potential to attract larger funding from agencies like the National Institutes of Health (NIH), the U.S. Food & Drug Administration (FDA), or corporate sponsors. This early support helps expand promising early-stage projects into comprehensive, multi-phase studies that can lead to new treatments for rare and complex diseases. Applications will be reviewed by NORD’s Medical Advisory Committee, a panel of volunteer rare disease medical experts.
How to Apply:
The application period opens on August 13, 2025 and closes on October 12, 2025 (11:59 pm PT). Researchers at accredited academic institutions, hospitals and nonprofit research centers; early-career investigators encouraged to apply. Learn more and view application instructions for each RFP here.
About NORD’s Rare Disease Research Grant Program
Since 1989, NORD has awarded more than $9 million in research grants to advance scientific discovery for rare diseases that lack treatment and research funding. With fewer than 5% of the approximately 10,000 known rare diseases having an FDA-approved therapy, and the cost to develop a prescriptive medication costing millions of dollars, early-stage funding plays a critical role in unlocking progress. NORD’s grant program has jump-started critical rare disease research, supported numerous peer-reviewed publications, and contributed to the development of two FDA-approved treatments. Learn more about NORD’s Rare Disease Research Grants Program.
