The EveryLife Foundation for Rare Diseases welcomed Stephen C. Groft, PharmD, to its board of directors during the Foundation’s board meeting held yesterday. Groft, a pioneer in advancing rare disease research, helped establish the Office of Orphan Products Development at the Food and Drug Administration in 1982. He also helped create the Office of Rare Diseases Research at the National Institutes of Health (NIH) in 1989 and served as its director from 1993 to 2014. Groft is now a special volunteer at the National Center for Advancing Translational Sciences at the NIH.
“There have been few greater champions for rare disease patients than Dr. Steven Groft who has been working tirelessly for decades to advance rare disease science and research,” said Julia Jenkins, EveryLife Foundation for Rare Diseases Executive Director. “We are incredibly grateful that he will continue his rare disease advocacy as a member of the EveryLife Foundation’s Board of Directors.”
Throughout his career, Groft’s major focus has been stimulating research for rare diseases and orphan products. He has co-authored numerous journal articles, book chapters, and two editions of Rare Diseases Epidemiology. Groft’s recent work has focused on a multi-organizational initiative through the International Collaboration on Rare Diseases and Orphan Drugs to expand collaborative activities in Latin America, called Enfermedades Raras en América Latina y en el Caribe.
“I am honored by this opportunity to collaborate with one of the most impactful rare disease advocacy organizations I’ve seen in my career,” said Dr. Groft. “I am excited to serve the rare disease community alongside such distinguished board members and continue the collaborative efforts to help meet the needs of patients with rare diseases and their families.”
Dr. Groft joins the following individuals on the EveryLife Foundation Board of Directors: Ritu Baral, Cowen and Company Managing Director/Senior Biotechnology Analyst; Jennifer Bernstein, Horizon Government Affairs Executive Vice President; Mark Dant, Ryan Foundation Executive Director and EveryLife Foundation Board of Directors Chair; Richard S. Finkel, MD, St. Jude Children’s Research Hospital Director of Experimental Neurotherapeutics in Translational Neuroscience Program; Julia Jenkins, EveryLife Foundation Executive Director and Board of Directors Secretary; Emil Kakkis, MD, PhD, Ultragenyx President/CEO and EveryLife Foundation Founder; Amrit Ray, MD, MBA, Bain Capital Life Sciences Senior Advisor; Vicki Seyfert-Margolis, PhD, MyOwnMed Founder and CEO and EveryLife Foundation Board of Directors Treasurer, and Frank Sasinowski, MS, MPH, JD, Hyman, Phelps & McNamara P.C. Director and EveryLife Foundation Board of Directors Vice Chair.
About the EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
