Mar. 11, 2016
Posted by Jennifer Huron
The Running for Rare marathon team will expand under new governance with the National Organization for Rare Disorders (NORD), the leading independent nonprofit representing all people with rare diseases and disorders. NORD will take over the program, which uses running as a platform to raise awareness and support for the rare disease community, from Sanofi Genzyme, the specialty care global business unit of Sanofi, this year.
“Running for Rare highlights the unmet and often heartbreaking needs of the nearly 1 in 10 Americans living with rare diseases—sadly, most of whom are children—and provides a way for people to get involved,” said Peter L. Saltonstall, President and CEO of NORD. “We are honored to have the support of such inspiring runners and individuals whose efforts directly help others.”
Funds raised by Running for Rare pay for medical testing for individuals who have exhausted all possible avenues to receive a medical diagnosis. These individuals are referred to NORD’s Undiagnosed Program by the National Institutes of Health (NIH) Undiagnosed Diseases Network (UDN), the primary national resource for patients and their physicians who have already tried other alternatives in seeking a diagnosis.
“As a longstanding partner of NORD, Sanofi Genzyme has been proud to establish and organize the Running for Rare marathon team for the past 8 years,” said David Meeker, M.D., Executive Vice President and Head of Sanofi Genzyme. “Transitioning the Running for Rare team to NORD will provide new opportunities for growth through NORD’s unmatched national network.”
The Running for Rare marathon team began as a grassroots team of four Genzyme employees in 2008, growing to more than 100 runners globally in 2015. Over the years, the team has raised nearly $750,000 for NORD and is committed to bringing awareness and support for all 7,000 rare diseases.
“The growth and excitement Running for Rare experienced last year set the stage for new avenues of community development and partnerships,” said Phil Maderia, Chairman of the Running for Rare Advisory Board. “We are excited to grow under NORD and broaden the relationships we’ve built throughout the rare disease community, to inspire and bring so many more people together, to reach further, and to continue to make a significant difference on behalf of this amazing community.”
The hallmark of Running for Rare that sets it apart from other charity teams is the Rare Community Partners program, which connects runners with individuals affected by rare diseases. Each partnership creates a relationship between the runner and patient partner, and provides a platform to share stories, raise awareness, find support, and connect with others going through similar challenges.
Running for Rare is currently accepting runners and Rare Community Partners for the Boston Marathon on April 18, Providence Full- and Half-Marathons on May 1, and the 2016 TSC New York City Marathon on November 6. For more information, visit www.rarediseases.org/runningteam.