National Organization for Rare Disorders (NORD) Announces Annual Seed Grant RFPs Totaling $245,000 to Accelerate Research for Five Rare Diseases

QUINCY, Mass., Aug. 13, 2025 /PRNewswire/ -- The National Organization for Rare Disorders (NORD^®), a leading national nonprofit serving more than 30 million Americans with rare diseases, announced five new requests for proposal (RFP) totaling $245,000 in seed grant funding.

These grants were funded by the Appendix Cancer/Pseudomyxoma Peritonei Research Foundation; 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. 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 nonexistent.  

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 and 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 Aug. 13, 2025, and closes on Oct. 12, 2025 (11:59 p.m. PT). Researchers at accredited academic institutions, hospitals and nonprofit research centers, and early-career investigators are encouraged to apply. Learn more and view application instructions 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.

About the National Organization for Rare Disorders  
Founded in 1983, the National Organization for Rare Disorders (NORD^®) is a leading independent, nonpartisan, nonprofit patient advocacy organization dedicated to improving the health and lives of over 30 million Americans living with rare diseases. In partnership with more than 350 disease-specific member patient organizations, NORD drives progress in rare disease research, care, and policy. Learn more at https://rarediseases.org/

SOURCE National Organization for Rare Disorders (NORD®)