Save the Date: Capitol Hill Briefing on Rare Disease Research

March 01, 2017

On Thursday, March 9, FASEB will host an educational briefing on rare disease research and the important role of the National Institutes of Health (NIH) in supporting basic science to improve human health. Rare diseases, also known as orphan diseases, are those that affect fewer than 200,000 people. Collectively, however, rare diseases afflict approximately 25 million people in the United States. There are no market incentives for developing treatments because each disease affects such a small population. Thus, public funding plays a crucial role in better understanding these disorders. In recent years, breakthroughs in genetics, biochemistry, and other basic science disciplines funded by NIH have begun to improve our ability to diagnose and treat these debilitating conditions.

The briefing will feature a panel of speakers who work on finding treatments for rare disorders and will highlight how the NIH’s investment in basic research is critical to advancing the health of the nation:

  • Hudson Freeze, PhD, FASEB President and Director, Human Genetics Program, Sanford Burnham Prebys Medical Discovery Institute
  • Hilary Vernon, MD, PhD, Assistant Professor of Pediatrics, Johns Hopkins University School of Medicine
  • Cristina Casanova Might, Founder & Executive Director, NGLY1.org

The briefing, organized in cooperation with Congressmen Scott Peters (CA-52) and Leonard Lance (NJ-7), will be held in the Longworth House Office Building, Room 1310 from noon to 1:30 p.m. The event is open to the public. Please RSVP by March 6 via email or by phone at (301) 634-7650.

Categories: Science Policy & Advocacy;