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Running for Rare Team

Through Running for Rare, NORD’s signature charity marathon team, runners join together to raise awareness for rare diseases while fundraising to support undiagnosed patients. This special team is made up of passionate and committed individuals seeking to make a meaningful difference for the rare community.

The funds raised by the Running for Rare Team will support the NORD/Undiagnosed Diseases Network (UDN) Patient Assistance Program. This program provides financial assistance to families who have exhausted all other alternatives for seeking a diagnosis.  NORD will help cover the basic diagnostic testing needed for patients and families to apply into the Undiagnosed Diseases Network.


Join the Team!

When you join the Running for Rare Team, you are joining a group of individuals who are passionate and committed to an important cause.  This grassroots team of 4 grew to more than 100 runners in 2015, raising over $1,000,000 over the last 12 years.  As any past team member will tell you, being part of this team is a unique, life-changing experience.

The team is composed of dedicated runners from around the world who will not only spend their personal time training for the marathons, but also host numerous events to raise funds and engage people in the cause. (Learn more about the runners at:

Runners interested in learning more can contact us at

RARE Community Partners

What makes this charity team so unique is the RARE Community Partner program. Each runner is paired with a partner (patient, family, advocate, or other) and builds a relationship with them throughout their training and marathon race.  This is the foundation for inspiration as the runners train throughout the year to run 13.1 or 26.2 miles!  The partnerships are more than symbolic; they are the beating heart of the team, and the RARE Community Partners (RARE Partners) are as much members of the team as the runners.

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 all 7,000 diseases and the 30 million Americans impacted by them.

If you or someone you know is interested in becoming a RARE Community Partner please fill out this interest form.


NORD is thankful to Sanofi Genzyme for their continued support of the team!