Apr. 20, 2015
Posted by Lisa Sencen
Talk about inspiring–today, members of the Running for Rare Diseases Marathon Team will pound out 26.2 miles in chilly temps while running the Boston Marathon on behalf of rare disease patients!
Each runner is partnered with an individual rare disease patient – see their amazing stories here – and this effort raises money, awareness and support for all 7,000 rare diseases. We are beyond thrilled and proud to partner with such an amazing and inspiring group of people.
Running for Rare Diseases has grown from a grassroots team of four runners to this year’s record-breaking team of 100+ runners. Over the years, the team has raised nearly $500,000 for NORD’s educational programs and, as of 2013, our Undiagnosed Diseases Patient Assistance Fund. The fund pays for medical testing for undiagnosed patients who cannot afford the basic medical work-up needed to make them eligible to apply for the National Institutes of Health (NIH) Undiagnosed Diseases Program (UDP). The team says, “We are thrilled to be able to provide this patient assistance program to support patients who have exhausted all other avenues to seek a diagnosis!”
As awareness of the Running for Rare Diseases team mission has grown exponentially, more and more individuals have been inspired to use running as a platform to connect with the rare disease community and spread the word about rare diseases. This year, the Running for Rare Diseases Team is participating in three events:
- The Boston Marathon (April 20, 2015)
- The Providence Marathon (May 3, 2015)
- The Providence Half Marathon (May 3, 2015)
The team’s dedicated runners are from around the U.S. and the world. They not only spend their personal time training for the marathons throughout the frigid winter months, but also host numerous events to raise funds and engage people in the cause.