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Join Our Team

Running for Rare® Team

Through Running for Rare, NORD’s signature charity running program, runners join together with community partners to raise awareness for rare diseases while fundraising. This special team is made up of passionate and committed individuals seeking to make a meaningful difference for the rare disease community. The funds raised by runners will help NORD’s mission to drive public policy, accelerate research and improve care for people living with rare diseases.

The Rare Community Partner program is what makes this team so special. Each runner is paired with a partner (patient, advocate, or other) and builds a relationship with him or her throughout their training leading up to race day. This is the foundation for inspiration as each runner trains throughout the year to run, walk, swim, or bike their way to the finish line. This program also gives each partner a platform to tell their story, raise awareness, find support and connect with those going through similar challenges.

The team is looking for patients and families who are interested in working together to make a difference on behalf of the over 7,000 rare diseases and the 25-30 million Americans impacted by them.

Interested in learning more? Contact us at [email protected].

    RARE Community Partners and their runners will be matched based on their preferences to ensure the best experience for both parties!
  • (E.G. Male or Female, Single or Family/Kids, English Speaking and/or Spanish/Other, etc.)
  • Please provide at least three full sentences to respond to this question.
  • Please provide at least three full sentences to respond to this question.
  • Fill in the blank to tell us a little more about yourself.
  • Requirements for Running for Rare Runners

    Participation on the Running for Rare team requires serious time and energy.
    *All items must be checked off in order for your application to be considered*
  • Event name, date, location, website link if available
  • Full name and phone number
  • Full name and phone number
  • A note about yourself - best run ever / biggest fan / toughest race / anything unique / extraordinary / obstacles overcome.
  • Please describe some of your hobbies and interests.

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Get Involved

Want to get involved in the Running for Rare Program? Whether you're looking to donate, sponsor, run, walk, volunteer, or become a rare community partner, we've got something for everyone!


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Featured Testimonials

Although our goal was to run the marathon, which was an amazing experience in of itself, the journey involved the team training, patient partner interactions, and fundraising made the experience worthwhile!
The patient partnership was my favorite part of the experience. I was fortunate enough to be paired with a family that is very active within their disease community. They live local to me so I had many opportunities to interact with them. We are also “friends” via social media so we were able to exchange almost daily progress updates.

Program Sponsors

Sponsorships available! Please contact us for more information.

NORD Links


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