The Running for Rare Diseases Marathon Team has grown from a grassroots team of four to this year’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.
Learn more about the team by visiting our blog: running4rare.org. You can also find us on Facebook, Instagram and Twitter under Running4Rare!
All funds raised through the Running for Rare Diseases Online Auction goes to the NORD/NIH Undiagnosed Diseases Program Fund . 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!
The 2016 online auction will conclude on Thursday, April 28, 2016 at 12:59:59 p.m. The final bid before 1 p.m. will be the winning bid.