Rare disorders agency links:

National Organization for Rare Disorders (NORD)

NIH Office of Rare Diseases

Genetic Alliance


Funding opportunities:

Collaboration, Education and Test Translation (CETT) Program: provides funding to facilitate the translation of new tests for rare genetic disorders. 

NIH Bench-to-Bedside Awards: to date more than 400 principal and associate investigators have collaborated on 135 funded projects with approximately $24 million distributed in total bench-to-bedside funding.

Orphan Products Grant Program (FDA): encourages clinical development of products for use in rare diseases or conditions.


The NIH/ORD Undiagnosed Diseases Program strives to provide answers to patients with mysterious conditions that have long eluded diagosis and advance medical knowledge about rare and common diseases.


Giving hope wings: the national Air Charity Network matches people in need with free flights and other travel resources so they can access specialized health care faciliities.


The National Disease Research Interchange (NDRI) provides many rare disease resources, including biospecimens