National Organization for Rare Disorders to Celebrate 30 Years of Achievement and Promote a Promising Future for the Rare Disease Community
30th Anniversary Gala to honor rare disease heroes and support the continuation of NORD’s critical work on behalf of the rare disease community
WASHINGTON, May 10, 2013 /PRNewswire-USNewswire/ — The 30(th) Anniversary Gala of the National Organization for Rare Disorders (NORD), to be held Tuesday, May 14, 2013, will honor rare disease heroes, celebrate 30 years of progress through the Orphan Drug Act (ODA) and NORD, and promote a promising future for the rare disease community.
This seminal event will recognize important milestones since 1983 and celebrate NORD’s historic past and promising future. For 30 years and counting, working with dedicated partners in patient advocacy, government and industry, NORD has been at the heart of rare disease activity, driving initiatives and bringing meaningful progress to patients.
“As part of our year-long 30(th) anniversary celebration, the Gala will pay homage to past accomplishments, celebrate progress to date, and – most importantly – reinforce our tradition of delivering results for the rare disease community,” said Peter L. Saltonstall, president and CEO of NORD.
Through the support provided by sponsors, the Gala will make possible continuation of NORD programs and services in advocacy, education and other areas for the 30 million Americans with rare diseases, their families and the organizations that serve them. It will also enable NORD to extend its reach and expand its impact in the future.
The evening’s program will recognize rare disease heroes who have touched countless lives, including Representative Henry Waxman (D-CA), author of the Orphan Drug Act, and other pioneers from government, patient organizations, academia and industry.
In addition, American Idol finalist and community advocate Siobhan Magnus, and the widely acclaimed Howard University Jazz Ensemble, will be on hand to provide the evening’s entertainment.
Honorees for NORD’s 30(th) Anniversary Gala are:
FOR LEADERSHIP IN PUBLIC POLICY:
- William V. Corr, Counsel to Congressional Subcommittee during Orphan Drug Act hearings and now Deputy Secretary, HHS
- Senator Nancy Kassebaum (KS-retired)
- Representative Henry A. Waxman (CA)
FOR VISION ON BEHALF OF PATIENTS
- Stephen C. Groft, PharmD, Director of the NIH Office of Rare Diseases Research
- Marlene Haffner, MD, MPH, Director (retired) of the FDA Office of Orphan Products Development
- Lars-Uno Larsson, founder of Swedish Orphan International AB and early industry advocate for orphan product development
- Abbey S. Meyers, advocate for the Orphan Drug Act and President of NORD for its first 25 years
- Jess G. Thoene, MD, rare disease medical expert, advocate, and one of NORD’s original medical advisors
FOR ORPHAN PRODUCTS APPROVED IN 2012
- Aegerion, Inc., for Juxtapid for homozygous familial hypercholesterolemia
- NPS Pharmaceuticals, Inc., for Gattex for short bowel syndrome
- Onyx Pharmaceuticals, Inc., for Kyprolis for multiple myeloma
- Sigma-Tau Pharmaceuticals, Inc., for Cystaran eyedrops for cystinosis
The Gala, to be held at the Mellon Auditorium in Washington DC, will begin with a reception at 6:30 p.m. followed by dinner at 7:30 p.m. For more information, to register to attend, or to donate to NORD and support its ongoing efforts on behalf of the rare disease community, please visit www.rarediseases.org.
About Rare Diseases
A rare disease is any disease affecting fewer than 200,000 Americans. There are nearly 7,000 such diseases, of which only about 350 have FDA-approved treatments, affecting nearly 30 million Americans.
Established in 1983, the National Organization for Rare Disorders (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. A nonprofit organization, NORD represents the 30 million Americans with rare diseases and is committed to the identification, treatment and cure of rare disorders through patient assistance, education, advocacy, research and patient/family services.
For more information, please visit www.rarediseases.org.
SOURCE National Organization for Rare Disorders (NORD)