President Schuster Joins National Rare Disease Advocacy Board

KGI President Sheldon M. Schuster, PhD, has been elected to the National Organization for Rare Disorders (NORD) Board of Directors, joining other noted leaders in the rare disease community.

NORD was instrumental in the passage of the Orphan Drug Act of 1983, which provides incentives to pharmaceutical companies to develop drugs for the thousands of identified rare diseases that affect nearly 25 million Americans. The incentives are crucial since financial profit in developing a drug for a disease that may afflict less than 100 people tends to be quite low.

"Thanks to NORD, there are treatments for literally hundreds of diseases that probably would not have been developed without their work," Schuster said. "It's an organization with a very special mission, and it's great to be a part of that."

Schuster said one reason he agreed to serve on the board was because NORD and KGI's Center for Rare Disease Therapies, which is devoted to finding drug therapies for rare diseases, have common goals.

"They are a lobbying organization and we're an educational institution. We don't compete in any way but we have a very common and overlapping interest in rare disease therapies," Schuster said.

"There are 7,000 rare diseases out there and, while it's wonderful to have treatment for 300 to 400, there's a great deal more to do. I think we're going to make a difference together."

Schuster is one of five new members of NORD's board, which plays an important role in furthering advocacy, education, research and patient services for individuals and families affected by rare diseases.

"We are thrilled that these very talented individuals have agreed to join us in these important endeavors. Their creative vision and depth of experience will be a tremendous asset at this critical point in time when healthcare is front and center on the national agenda," said NORD President and CEO Peter L. Saltonstall in a news release.