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Genzyme And NORD Establish Program To Help Undiagnosed Patients With Rare Diseases

Genzyme, a Sanofi company (EURONEXT: SAN and NYSE: SNY), and the National Organization for Rare Disorders (NORD) today announced the creation of a fund to pay for standard diagnostic testing for people with mysterious, undiagnosed medical conditions. The fund will help those who have applied to the National Institutes of Health (NIH) Undiagnosed Diseases Program, but who cannot afford the basic medical tests needed to make them eligible to participate in the NIH program.

“While progress in scientific research has been very promising in recent years, millions of Americans who have rare diseases go for five years or longer without an accurate diagnosis,” said NORD President and CEO Peter L. Saltonstall. “This delays treatment and creates enormous financial and emotional stress for patients and their families.”

Genzyme has been a longstanding partner of NORD, and the creation of the Genzyme/NORD NIH Undiagnosed Diseases Fund is another way for Genzyme to support the rare disease community. The new fund is made possible in part by a team of Genzyme employees who run the Boston Marathon ® to raise funds for NORD services on behalf of all patients and families affected by rare diseases. Since 2008, members of the Genzyme Running Team have been paired with rare disease patient partners, and devote months before the Boston Marathon to training, raising awareness and fundraising.

“This initiative highlights the unmet need that still exists in helping patients with rare diseases find an accurate diagnosis,” said David Meeker, MD, President and CEO, Genzyme. “We are proud of the work of the Genzyme Running Team and are excited that their fundraising efforts will be focused on a program with such immediate and direct benefit for patients.”

In 2014, the NIH Undiagnosed Diseases Program will expand to include a network of major academic medical centers across the U.S. The Genzyme/NORD NIH Undiagnosed Diseases Fund will support testing for patients applying to all clinical sites.

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