Rare Disease Resources
For Information
National Organization for Rare Disorders (NORD)
A nonprofit organization dedicated to individuals with rare diseases and the organizations that serve them. NORD offers community support, research resources, patient assistance programs, disease education, and more.
NIH: National Center for Advancing Translational Sciences (NCATS)
NCATS leads with a goal of turning research insights into health solutions. The Center offers some fantastic resources for the rare disease community, including the Rare Diseases Clinical Research Network, Rare Disease Day at NIH, and the Genetics and Rare Diseases Information Center.
EveryLife Foundation
The EveryLife Foundation is a nonprofit, non-partisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy. EveryLife Foundation hosts Rare Disease Week on Capitol Hill every year and offers numerous resources and programs, from the Advocacy Center to Pride in Rare.
1 of 20 Podcast
Jonathan Cappiello, the host of the 1 of 20 Podcast, is just one of 20 people in the world diagnosed with his rare condition. His podcast is an excellent resource for people who want to listen to stories about different conditions and better understand the people behind the diagnoses.
Patient Advocate Foundation
The Patient Advocate Foundation is a national 501 (c)(3) non-profit organization which provides case management services and financial aid to Americans with chronic, life threatening and debilitating illnesses. They even offer a national financial resource directory.
For Patients & Families
Librarey
Where rare disease & disability communities discover & share resources. The site currently has over 4,850 resources for rare disease families across various locations, disease states, and demographics.
Uplifting Athletes
Uplifting Athletes harnesses the power of sport to invest in the lives of people with rare diseases. From supporting research through the Young Investigator Draft, to raising awareness and uplifting community leaders, to providing Uplifting Experiences to enrich the lives of people with rare diseases, Uplifting Athletes has something for everyone.
Global Genes
Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases on a global scale. Resources include free and personalized rare patient services, grant opportunities, a clinical trials hub, and LOTS of education.
ClinicalTrials.gov
As many people in the rare disease community recognize, finding doctors and scientists interested in researching your disease can be challenging. This website allows you to search for potential clinical trials in your disease state that you could possibly participate in.
Genetic Alliance
Genetic Alliance is a non-profit organization that deploys high tech and high touch programs for individuals, families, and communities to transform health systems by being responsive to the real needs of people in their quest for health. Resources include iHope Genetic Help for undiagnosed individuals, a BioBank, and registry set-up.
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