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Genzyme, NORD Create Fund for Patients Applying to NIH Undiagnosed Diseases Program

NEW YORK (GenomeWeb News) – Genzyme and the National Organization for Rare Disorders (NORD) this week announced the creation of a fund to help patients with mysterious, undiagnosed illnesses.

The fund will be used to help applicants to the National Institutes of Health Undiagnosed Diseases Program, but who are unable to pay for the medical tests required to make them eligible for participation in the program.

The new fund is made possible in part by Genzyme employees who run the Boston Marathon to raise funds for NORD services on behalf of patients and families affected by rare diseases.

"This initiative highlights the unmet need that still exists in helping patients with rare diseases find an accurate diagnosis," Genzyme President and CEO David Meeker said in a statement. Genzyme is part of pharmaceutical firm Sanofi.

In 2014 NIH's Undiagnosed Diseases Program is expanding to include a network of major academic medical centers in the US. The fund announced today will provide funding for patients applying to all clinical sites, Genzyme and NORD said.

The UDP was created in 2008 and is managed by the National Human Genome Research Institute, the NIH Office of Rare Diseases Research, and the NIH Clinical Center. It brings together multidisciplinary teams of scientists and clinicians to try to discover the cause of diseases in select patients with disorders that are difficult to diagnose.

Patients applying for admission to the program provide their medical history and medical test results, which are evaluated by NIH physicians. NIH admits only those patients that physicians believe they can help. Only those with a baseline of preliminary medical tests are considered for participation into the program.

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