WASHINGTON, March 12, 2019 — The National Organization for Rare Disorders (NORD) today announced the iniduals, organizations and industry innovators who will be honored for their outstanding work in support of the rare disease community at this year’s Rare Impact Awards on June 22.
The Rare Impact Awards is an event hosted annually by NORD, the leading independent advocacy organization committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research and patient services. This year’s Rare Impact Awards event will be presented as part of the 2019 Living Rare, Living Stronger NORD Patient and Family Forum, which will bring the rare community together with physicians, medical students and health care professionals for a program of learning, sharing and connecting in Houston, TX.
“There are 25-30 million Americans living with rare diseases today, and more than half of them are children,” said Peter L. Saltonstall, President and CEO of NORD. “Thankfully, there are also people, organizations and companies doing extraordinary work to help improve and save their lives. It is our privilege to honor them for their stellar contributions to the community, and our pleasure to do so in a truly out-of-this-world setting.”
The 2019 Rare Impact Awards will take place on Saturday, June 22 at one of Houston’s top attractions, Space Center Houston, a Smithsonian Affiliate, the Official Visitor Center of NASA Johnson Space Center and a Certified Autism Center. More than 250,000 teachers and students from around the world visit the center annually to experience the educational space museum with more than 400 things to see and do.
2019’s honorees span the rare disease landscape and will include the Abbey S. Meyers Leadership Award being presented to the Platelet Disorder Support Association, and Rare Impact Awards being presented to Donna Appell, R.N., Executive Director and President of the Hermansky-Pudlak Syndrome Network; Wendy Chung, M.D., Ph.D., of Chung Lab at Columbia University Medical Center and the Discover Program for Undiagnosed Diseases; The Honorable Sarah Davis, State Representative from Texas; The Honorable Michael McCaul, Congressman from Texas; Debra Regier, M.D., Ph.D., Director of Education, Rare Disease Institute at Children’s National Medical Center; Madison Shaw, founder of Maddie’s Herd; and Deborah Skolaski, Rare Action Network State Ambassador to Texas.
Industry Innovation Award honorees include Agios for Tibsovo®; Alnylam Pharmaceuticals for Onpattro™; Amicus Therapeutics, Inc. for Galafold™; BioMarin Pharmaceutical Inc. for Palynziq®; Dompé for Oxervate™; GW Pharmaceuticals for Epidiolex®; Loxo Oncology for Vitrakvi®; Novimmune and Sobi for Gamifant®; and Ultragenyx Pharmaceutical Inc. for Crysvita®.
The 2019 event is presented with support from Astellas Pharma U.S.; Genentech; AlphaNet, Inc.; AveXis, Inc.; Horizon Pharma; Recordati Rare Diseases; Amicus Therapeutics, Inc.; and bluebird bio.
About the National Organization for Rare Disorders (NORD)Ⓡ
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the more than 7,000 rare diseases, of which approximately 90 percent are still without an FDA-approved treatment or therapy. Rare diseases affect 25-30 million Americans. More than half of those affected are children.
NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research and providing patient and family services for those who need them most. NORD represents more than 280 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community.
SOURCE National Organization for Rare Disorders (NORD)