Mar. 17, 2016
Posted by Jennifer Huron
Continuing its annual tradition of recognizing the people, organizations, advocates and companies who are making a difference in the fight against rare diseases, the National Organization for Rare Disorders (NORD)® announces the 2016 Rare Impact Award recipients to be honored on May 17.
In its inaugural year, the Rare Impact Awards continues NORD’s 30-year tradition of bringing the entire rare disease community together to celebrate those who are making extraordinary contributions to help others.
“People who make a positive impact on the rare disease community go above and beyond, overcoming certain obstacles, to make meaningful change in the lives of others,” said Peter L. Saltonstall, President and CEO of NORD. “It is our honor to recognize their work to help the 1 in 10 Americans—most of whom are children—living with rare diseases.”
This year’s honorees include Desiree Lyon, co-founder and executive director of American Porphyria Foundation, and Noah Victoria, courageous patients who advocate for themselves and others; Debra Miller, founder of CureDuchenne and parent advocate working tirelessly to make a difference for all rare kids and families; leading bioethicist Arthur Caplan, Ph.D.; driven researcher and educator Dawn Laney, M.S., C.G.C., C.C.R.C.; Stephen Cederbaum, M.D., whose patients describe as having changed their lives forever; Friedreich’s Ataxia Research Alliance, a passionate patient organization working to make a difference for everyone affected by rare diseases; industry innovators Alexion Pharmaceuticals, Inc., Asklepion Pharmaceuticals, LLC, Astellas Pharma, United Therapeutics Corporation, and Wellstat Therapeutics Corporation; and national health leaders Senator Orrin Hatch (R-Utah) and Congresswoman Doris Matsui (D-CA).
The 2016 honorees will be recognized at the Rare Impact Awards on Tuesday, May 17 at 6:30 p.m., at the Warner Theatre, in Washington, D.C.
The jazz band, The Recessionals, will perform throughout the event, which will feature cocktail and culinary receptions before and after the show.
The event will serve as a fundraiser for NORD to support the organization’s mission of providing education, advocacy, patient support and research for the 30 million Americans with rare diseases. More than 500 distinguished guests are expected to attend.
The Benefactor sponsor is Sanofi Genzyme. The Diamond sponsor is BioMarin Pharmaceutical. To learn more, register for tickets, or for sponsorship opportunities, please visit rarediseases.org/rare-impact-awards.