NORD Meeting Connects Rare Disease Community

Annual summit focuses on improving lives of rare disease patients.

Flag files over the U.S. Capitol in Washington

Finding new and innovative ways to treat rare diseases requires the input of scientists, doctors, biotechnology companies, government and, of course, patients. Bringing those diverse groups together is the idea behind this month’s Rare Diseases & Orphan Products Breakthrough Summit organized by the National Organization for Rare Disorders (NORD).

The summit, which takes place Oct. 21-22 in Washington, D.C., is headlined by a keynote address from two mothers of rare disease patients whose stories NORD says “illustrate the powerful ways in which families impacted by rare diseases are helping to drive progress in research, an increased understanding of diseases and the development of treatments.”

Other highlights include a town hall session on rare disease research featuring representatives from the National Institutes of Health and an interactive dialogue panel with top officials from the Food and Drug Administration (FDA). Acting FDA Commissioner Norman Sharpless will also be delivering keynote remarks.

“The NORD summit is one of a very small number of venues in the US that brings together stakeholders across the range of rare disease,” said Patrick Collins, CSL Behring’s Senior Director of Healthcare Policy and External Affairs, who will be taking part in a panel discussion on improving communication and partnership between insurers, healthcare providers and patients. “The panel in which I am participating is focused on discussing and exploring actions that have worked across stakeholders to remove barriers to access for the life-saving treatments companies like ours manufacture for patients.”

More than 800 people are expected to attend this year’s summit, which NORD bills as the “largest and most innovative multi-stakeholder event of its kind.”