Mesothelioma Advocates Invited to Attend the Conference on Rare Diseases and Orphan Products

• Nancy Meredith
• For Your Family

DIA and the National Organization for Rare Disorders (NORD) have announced the program for the US Conference on Rare Diseases and Orphan Products to be held Oct. 22-24 at the Capitol Hilton, Washington, D.C. With the motto, “Shaping the Future Now,” organizers invite all stakeholders – patients, patient organizations, researchers, drug and device companies, investors, thought leaders and government – to come together for three days to focus on rare diseases and orphan product research, development and access. In the United States, there are close to 7,000 rare or orphan diseases, including mesothelioma, thyroid cancer and cerebral palsy, affecting close to 30 million Americans.

The conference, organized in collaboration with FDA, NIH, EURORDIS, and the Duke Department of Pediatrics, will discuss the challenges facing orphan product development and access. In a press release announcing the program, Peter L. Saltonstall, President and CEO of NORD said, “This vital meeting will provide important information for everyone living with a rare disease or working in orphan product development.”

The conference will offer sessions focusing on three primary themes: research and regulation; risk tolerance for the rare disease patient; and special challenges in rare diseases. Topics include the current and emerging drug development environment, reenactment of the Prescription Drug and Medical Device User Fee Act, and an update on NIH’s new National Center Advancing Translational Science.

NORD is a non-profit organization that receives no government funding and relies entirely on private donations. The organization offers vital services to the public through providing information about rare diseases, referrals to patient organizations, research grants and fellowships, advocacy for the rare-disease community, and Medication Assistance Programs that help needy patients obtain certain drugs they could not otherwise afford.

In the United States, an orphan disease status is assigned to a disease or disorder if it affects fewer than 200,000 Americans at any given time. Mesothelioma is diagnosed in close to 3,000 Americans each year, with just as many dying from the disease.

Mesothelioma representatives interested in attending the conference can register on DIA’s website.