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Rare Disease Marathon Fundraising Blog Archive

The Running for Rare Diseases Marathon Team grew from a grassroots team of four to 2016’s record-breaking team of more than 100 runners. Over the years, the team has raised nearly $500,000 for the National Organization for Rare Disorders (NORD) and is committed to bringing awareness and support for all 7,000 rare diseases.

Each runner also partners with an individual rare disease patient, getting to know them, their family, and their disease community. These partnerships are more than symbolic; they are the beating heart of the team, and the patient partners are just as much members of the team as the runners.

As awareness of the team’s 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 four events:

• The Boston Marathon (April 18, 2016)
• The Providence Marathon (May 1, 2016)
• The Providence Half Marathon (May 1, 2016)
• The NYC Marathon (Nov 6, 2016)

The team is composed of dedicated runners from around the world who will 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.

At the end of 2013, we announced that all the funds raised for NORD will support the NORD/NIH Undiagnosed Diseases Program (UDP). As many rare disease patients must endure a long odyssey before finally receiving an accurate diagnosis, the entire Running for Rare Diseases team is passionate about enabling early diagnosis for those living with mysterious, rare conditions.

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 the UDP. 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!