Jul. 19, 2019
TOPIC: Featured News
Posted by Lisa Sencen
Washington, DC, July 19, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the over 25 million Americans with rare diseases, announces the appointment of four new members to its Board of Directors, effective immediately.
Joining the Board of Directors are Kay Holcombe, Neil Horikoshi, Phillip L. Pearl, MD and Mike Porath. “Our four newest Board members each embody the spirit of collaboration central to NORD’s mission and bring experience, talent and energy to the table,” said Peter L. Saltonstall, President and CEO of NORD. “We are fortunate to have them on our team as we continue to fight to improve the lives of Americans with rare diseases.”
Kay Holcombe serves as Senior Advisor to the Milken Institute Center for Public Health. She recently retired as Senior Vice President for Science Policy at BIO, the Biotechnology Innovation Organization. Prior to that, she was Vice President for Government Relations at Sanofi-Genzyme; Executive Vice President of Policy Directions Inc., a policy advisory and advocacy firm; professional health legislative staff and senior health policy advisor for the House of Representatives Committee on Energy and Commerce; professional health legislative staff for the Senate Committee on Labor and Human Resources; Deputy Associate Commissioner for Legislative Affairs, U.S. Food and Drug Administration; and Executive Vice President of the Foundation for Biomedical Research.
She was also Associate Director for Public Health Legislation, HHS Office of the Assistant Secretary for Legislation; Deputy Associate Administrator for Planning, Evaluation, and Legislation, Health Resources and Services Administration; Special Assistant to the Director, Division of Legislative Affairs, National Institutes of Health; and Executive Secretary, National Heart, Lung, and Blood Institute National Advisory Council. Kay is a member of the board of the Reagan-Udall Foundation for the FDA, the National Blood Clot Alliance and the Critical Path Institute.
Neil Horikoshi is CEO and Executive Director of the Aplastic Anemia and MDS International Foundation. Prior to being named CEO and Executive Director, Neil led a distinguished 30-year career at International Business Machines Corporation (IBM), where he served in a variety of legal and executive management positions in the United States and Asia. After his IBM career, he led the Asian and Pacific Islander American Scholarship Fund (APIASF) as their President and Executive Director.
Neil previously served as Chairman of the Board of AAMDS International Foundation, and currently serves as Advisory Council member of Asian Americans Advancing Justice-AAJC, and the “Go For Broke” National Education Center.
Mike Porath is the Founder and CEO of The Mighty (themighty.com), a digital health community created to empower and connect people facing health challenges and disabilities. He began his career in journalism at ABC News, where he was the network’s first overseas digital reporter and was awarded the Society of Professional Journalists’ top honor for his reporting in Kosovo. He has held a variety of writing, editing, producing and executive roles at media companies including ABC News, NBC News, The New York Times and AOL.
Mike is also on the board of directors and fundraising chair of The Dup15qAlliance, a non-profit organization that supports people with Dup15q syndrome, such as his daughter.
Phillip L. Pearl, MD is Director of Epilepsy and Clinical Neurophysiology and William G. Lennox Chair at Boston Children’s Hospital and Professor of Neurology at Harvard Medical School. Originally from Baltimore, he attended Johns Hopkins University, Peabody Conservatory of Music and University of Maryland School of Medicine. He took his residency at Baylor College of Medicine in Houston and fellowship at Boston Children’s Hospital. Phillip was Division Chief of Neurology at Children’s National Medical Center and Professor of Neurology, Pediatrics and Music at the George Washington University School of Medicine in Washington, DC, where he spent 23 years from 1990-2013, until relocating to Boston in January 2014. He is a Past President of the Professors of Child Neurology and President-Elect of the Child Neurology Society.
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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 is made strong together with over 275 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community.