National Resources:

Mission Statement: NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services. 

  • NORD is a national patient advocacy organization that does advocacy on Capitol Hill in DC for federal policy affecting individuals with rare diseases. They will sometimes initiate their own bills; such as, the Orphan Drug Act of 1983, the bill that NORD was built on, and at other times they will join coalitions of multiple national patient organizations making sure the rare disease voice is heard at the table. In addition to federal policy, NORD, also weighs in on specific state policy issues, has state policy priorities, and an advocacy network for each state through their rare action network, Other features of NORD include:

    • A membership base of over 280 501(c)3 organizations and it is growing every day. Organizations can join by an application. The collection of members represents specific rare disease patient support and advocacy organizations.

    • An education department which puts out educational programming, webinars, reports, and videos throughout the year.

    • Rare Disease Registry Platform for specific organizations to use for their disease community.

    • Patient Assistance Program for certain disease.

    • A robust database of the description and details of each of the 7,000 rare diseases (close to it!).

    • A research grant program for rare disease researchers across the world.

EveryLife Foundation

The Foundation works with patient organizations, industry, academic scientists, the Food and Drug Administration (FDA), and National Institutes of Health (NIH) to improve the clinical development process through our Rare Disease Workshops Series, Rare Disease Legislative Advocates events, and legislation. While the Foundation remains mainly focused on regulatory issues, it also works to grow the rare disease community by spearheading programs that fulfill unmet need for patients and by supporting other organizations working to help empower the rare disease community.

  • EveryLife Foundation programs include Community Congress, Rare Disease Legislative Advocates,, Rare Artist, and Young Adult Representatives of RDLA. Events include Rare on the Road Leadership Tour hosted in different cities every year, Rare Disease Scientific Workshop, and A Rare Affair for Rare Diseases

Rare Disease Legislative Advocates

Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations.

  • Events include Rare Disease Week on Capitol Hill. Happening February 24-28, 2019. Register today!

  • Events include In-District Lobby Days happening every August, Rare Voice Awards, and monthly webinars


The Young Adult Representatives of Rare Disease Legislative Advocates (RDLA) is a new program which puts together a highly motivated group of 16-30 year olds (age limits are flexible) from the rare disease community in diverse areas of the country and are connected to rare disease in a variety of ways. All ethnicities, genders, disability statuses, religions, cognitive levels or political parties are invited to join. The main purpose of YARR is to instill confidence in the next generation of rare disease advocates. The group advocates to bring more affordable, safe and effective treatments to the rare disease community.

Global Genes   

Mission Statement: Our purpose is to connect, empower, and inspire the rare disease community. We connect rare disease patients, advocates and rare disease experts to help eliminate the challenges of rare disease.

  • Events include RARE Patient Advocacy Summit, RARE Drug Development Symposium, World Rare Disease Day, Denim Dash Virtual 5K, RARE Meetups, and RARE in the Square