CALLING ALL: Rare disease patient advocates who want to participate in a life-changing experience to raise awareness and funds for patients desperately seeking a diagnosis!

If you’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 four runners to last year’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 team’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).  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.  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.  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 Marathon from all members of the rare disease community.  To learn more about what it takes to become a runner, you can write to Running4Rare@gmail.com  or download the application form  which outlines the expectations. Applications are due by 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 “Patient Partners” play an instrumental role in the team’s training and preparation for race day.  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.  Patient partners are encouraged to stay in touch with their runner, write blogs for the Running Team’s website, and join the runners in their awareness campaigns and fundraising efforts.  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.  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.  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.  If you are interested in being a patient (or family member) partner to one of the runners, please submit an interest form.

For additional information, check out the Marathon Team Video and the 2014 Boston Marathon slideshow.

Posted in Patient Stories
3 comments on “CALLING ALL: Rare disease patient advocates who want to participate in a life-changing experience to raise awareness and funds for patients desperately seeking a diagnosis!
  1. Doris Buttrell says:

    Interested in becoming a patient partner as my daughter has a rare disease. However, we do not live close to where the marathons take place. Can we still do this?

    Thanks,
    Doris Buttrell

    • phil says:

      Doris, many of our patient partners do not live in the New England Area. Technology these days allows for us to connect in wonderful ways IE, Skype, Facetime etc. It is always preferred that the patient partner can come to the marathon but it is not essential.

  2. Emma Rooney says:

    Exciting news! Great that there will also be more opportunities for runners from the rare disease community to participate as well. Good luck recruiting an awesome 2015 team. No doubt there will be plenty of interest.
    Being a patient partner in 2014 continues to inspire my running journey and I look forward to staying in the loop.

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Archive of posts from Marathon runners dedicated to making a positive impact on the lives of people with serious disease.