If youâ€™re a rare disease patient or patient advocate who is passionate about helping patients with undiagnosed diseases, we have an opportunity for you!
About the Running For Rare Diseases Marathon Team
The Running for Rare Diseases Marathon Team has grown from a grassroots team of fourÂ runners to last yearâ€™s record-breaking team of 30 runners participating in the Boston Marathon, which included patients and rare disease community members. Over the years, the team has raised nearly $500,000 for NORD. As awareness of the teamâ€™s mission has grown exponentially both within the company and outside of it, 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.
To help grow the team (and thus raise more awareness and funds) the Running for Rare Diseases Team will now include three events:
- The Boston Marathon (April 20, 2015)
- The Providence Marathon (May 3, 2015)
- The Providence Half Marathon (May 3, 2015)
Last year, Genzyme and the Genzyme Marathon team, in partnership with the National Organization for Rare Disorders (NORD), announced that all the funds raised will support the Genzyme/NORD NIH Undiagnosed Diseases Program (UDP).Â Established in 2008, the NIH UDP is the primary national resource for patients and their physicians who have exhausted other alternatives in seeking a diagnosis.Â Those accepted into the program go to the NIH Clinical Center in Bethesda, MD, where a multidisciplinary team of medical experts seeks to unravel the mystery and determine a diagnosis.Â The new fund will pay for the medical testing for individuals who cannot afford the basic medical work-up needed to make them eligible to apply for UDP.
This year, the team will grow to over 75 dedicated runners from around the world who will not only spend their personal time training throughout the frigid winter months, but also host numerous events for fundraising and awareness.
Would you like to join the Running for Rare Diseases Team?
The team is accepting applications for the Providence Marathon and Half MarathonÂ from all members of the rare disease community.Â To learn more about what it takes to become a runner, you can write to Running4Rare@gmail.comÂ Â or downloadÂ the application formÂ which outlines the expectations. Applications are due byÂ Friday, October 31, 2014.
The Patient Partner Program
For 7 years, runners have been paired with patients and/or families affected by rare diseases who serve as their source of inspiration. These â€œPatient Partnersâ€ play an instrumental role in the teamâ€™s training and preparation for race day.Â Many Patient Partners have participated for multiple years because they find it a life-changing experience.
“We could not have asked for better. We have been involved for 2 years and have loved every minute.” Patient Partner, 2014
How does it work? Patient partners are paired with a runner and exchange stories and photos to begin the development of what we hope to become a lifelong relationship.Â Patient partners are encouraged to stay in touch with their runner, write blogs for the Running Teamâ€™s website, and join the runners in their awareness campaigns and fundraising efforts.Â In the months leading up to the Marathon and the weekend before the race, there will be planned events where Patient Partners will be able to connect with the runners, as well as with other Patient Partners and their families.Â On the day of the Marathon, Patient Partners and their families will join the team, NORD, and other supporters to root for the team in the cheering section on the Marathon course.Â The team is looking for patients, or families, who are interested in working together to make a difference on behalf of the greater rare disease community.
How do I become a Patient Partner?
Each year, NORD helps pair each runner with a patient and/or family member partner who is affected by rare diseases. The patient partners play a critical role by providing inspiration for the runners as they train throughout the winter.Â If you are interested in being a patient (or family member) partner to one of the runners, please submitÂ an interest form.