Celebrating the 30th Anniversary of NORD and the Orphan Drug Act!
Heroes of the rare disease community joined future advocates on the stage at the glittering 30thAnniversary Celebration of the National Organization for Rare Disorders (NORD) on May 14th at the Mellon Auditorium in Washington DC.
Before an audience of 500 people, Representative Henry Waxman (CA) hailed Abbey Meyers and other patient advocates for their leadership and vision in promoting federal incentives to encourage the development of treatments for people with rare diseases. Rep. Waxman, the author and chief sponsor of the Orphan Drug Act, was one of the honorees for the event, which was a highlight of NORD’s year-long 30th Anniversary observance.
On an evening that many are describing as “magical”, three young representatives of the next generation of rare disease patient advocates also spoke. Megan Barron, a recent Duke University graduate; 11-year-old Brooke Foster; and 8-year-old Ian Brown talked about the rare diseases of particular concern to them – epidermolysis bullosa, mastocytosis, and Langerhans cell histiocytosis – and thanked the rare disease heroes for the work they have done on behalf of patients and their families.
In addition, by three patients and the parent of a patient -- Kathryn Bundy, Christian Jacobs, Reina Weiner, and MaryBeth Krummenacker – presented awards to senior officials from four companies for innovative products approved by the Food and Drug Administration in 2012.
U.S. Deputy Surgeon General Boris Lushniak, MD, served as guest emcee, assisted by longtime NORD adviser and board member Frank Sasinowski. Entertainment was provided by the Howard University Jazz Ensemble and American Idol finalist Siobhan Magnus.