Washington, D.C., March 15, 2017—The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 2017 Rare Impact Awards on May 18 in Washington, D.C.
The Rare Impact Awards is a charity event that celebrates those who are boldly leading efforts to make a difference for people living with rare diseases. The benefit is 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.
“There are 30 million Americans living with rare diseases and more than half of these people are children,” said Peter L. Saltonstall, president and CEO of NORD. “This evening will showcase the remarkable stories of those are who creating a brighter future in which every person with a devastating medical condition has access to a cure.”
The 2017 honorees include patients Ellie McGinn, Christine Grube, and Brandon Hudgins; caregiver and White House Precision Medicine Initiative appointee Matthew Might, Ph.D.; patient and advocate Beth Nguyen, R.N.; researchers and clinicians Robert Desnick, Ph.D., M.D., Frederick Kaplan, M.D., and Cynthia Tifft, M.D.; national health leaders Rep. Diana DeGette (D-CO) and Sen. Johnny Isakson (R-GA); A Twist of Fate – ATS, a nonprofit patient organization serving the Arterial Tortuosity Syndrome community; and industry innovators Advanced Accelerator Applications USA, Biogen, CSL Behring, Intercept Pharmaceuticals, Jazz Pharmaceuticals, and Sarepta Therapeutics.
Nationally touring music artist and winner of NPR Music’s 2016 Tiny Desk Contest, Gaelynn Lea, will perform original songs during the event in support of the millions of people with rare diseases. In addition to her work as a performing and recording artist, Gaelynn is a public speaker who uses her music as a platform to advocate for people with disabilities and to promote positive social change. The David Bach Consort will also perform.
The Rare Impact Awards serves as a NORD’s signature fundraiser to support the organization’s mission of providing education, advocacy, research, and patient support for the 1 in 10 Americans who are battling rare diseases. More than 350 distinguished guests are expected to attend.
The event is presented with support from benefactor sponsors Sanofi Genzyme and Shire and diamond sponsors BioMarin Pharmaceutical and CSL Behring.