Mar. 21, 2018
Posted by Lisa Sencen
Washington, D.C., March 21, 2018—The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 35th Anniversary Celebration presenting the Rare Impact Awards on May 17 in Washington, D.C.
The Rare Impact Awards is an annual event hosted by NORD, the leading independent nonprofit organization representing the 30 million Americans with rare diseases, and brings together supporters of the organization’s mission. This year’s evening celebrates NORD’s 35 years as well as those who are boldly leading efforts to make a difference for people living with rare diseases.
“There are 1 in 10 Americans living with rare diseases and more than half are children. We are looking forward to showcasing the stories of those are who bravely working towards a future in which every one of those people has access to a treatment or a cure,” said Peter L. Saltonstall, president and CEO of NORD. “The evening will be incredibly special because this year, we are also marking NORD’s 35th anniversary as well as that of the Orphan Drug Act.”
The 2018 honorees include Robert M. Campbell, Jr., M.D. for Lifetime Achievement; Estelle Benson accepting on behalf of GBS/CIDP Foundation International, an organization committed to supporting those living with Guillain-Barre syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related syndromes for the Abbey S. Meyers Leadership Award; Richard Pazdur, M.D. for Public Health Leadership; and with Rare Impact Awards going to patient advocates Ellen Sigal, Patrick Dunegan, and Maria Kefalas; Internet educator Chris Ulmer; researcher Elisabeth Dykens, Ph.D.; national health leader The Honorable Marcy Toepel, State Representative from Pennsylvania; and industry innovators BioMarin Pharmaceutical Inc., Cook Medical LLC, Foundation Medicine, Inc., Novartis, Spark Therapeutics, and Ultragenyx Pharmaceutical Inc.
The evening will include a special performance by Michael Smedley, a talented young pianist who lost his sight due to CRB1 retinal disease, a rare genetic degenerative disease. The David Bach Consort will also perform.
The 2018 event is presented with support from benefactor sponsor Sanofi Genzyme, gold sponsors Alexion Pharmaceuticals, Inc. and CSL Behring, silver sponsor Vertex Pharmaceuticals Worldwide, and bronze sponsors Recordati Rare Diseases, Selecta Bio, Hyman, Phelps & McNamara, P.C., and AveXis, Inc.
To purchase tickets, visit rareimpact.org/awards.