WINTER SPRINGS, Fla.--(BUSINESS WIRE)--The International FOP Association (IFOPA) announced today that it has appointed Betsy Bogard as the IFOPA’s Global Research Development Director.
Ms. Bogard has nearly 20 years of experience in managing drug development activities. She will lead the IFOPA’s engagement with academic researchers and the pharmaceutical industry as the IFOPA works to foster drug development to treat Fibrodysplasia Ossificans Progressiva (FOP), an extremely rare and severely disabling genetic condition for which there is currently no effective treatment.
Worldwide interest in FOP research has expanded since the identification of the gene that causes the disorder in 2006. Currently more than 25 groups around the world are actively involved in research into the causes and potential therapies for FOP. Much of the progress to date has been supported by or conducted in consultation with the IFOPA. The IFOPA has a longstanding relationship with the Center for Research in FOP and Related Disorders at the University of Pennsylvania School of Medicine, the pioneering group in FOP research.
“Research and drug development in FOP is rapidly evolving, making this an exciting and demanding time for the IFOPA. We welcome the experience in biotechnology and rare disease drug development that Ms. Bogard brings to the IFOPA. She will be indispensable in helping us effectively partner with research groups who share our commitment to developing therapeutic approaches to FOP,” said Marilyn Hair, Chair of the IFOPA Board of Directors.
“With their 25-year history of leadership in the FOP community, the IFOPA is in a unique position to promote collaboration and catalyze progress in FOP drug development,” said Ms. Bogard. “I look forward to working with the community towards our collective vision for a safe and transformative therapy for FOP.”
Ms. Bogard comes to the IFOPA from her position as Director, Program Management for Genzyme, a Sanofi company, where she led early-stage orphan disease drug development activities. She also brings experience developing and managing disease registries, including three years managing the International Collaborative Gaucher Group’s Gaucher Registry, one of the largest and oldest registries for a rare disease. Ms. Bogard received her M.S. in Health Policy and Management from the Harvard School of Public Health.
The Bogard family has a long and deep connection to the IFOPA. Ms. Bogard’s brother, Jud Bogard, has FOP and the family conducted the organization’s first fundraiser in 1991. Ms. Bogard was a board member of the IFOPA from 2012-2013.
About Fibrodysplasia Ossificans Progressiva (FOP)
FOP is a rare genetic disease in which soft tissue transforms permanently into bone, ultimately imprisoning those afflicted in a second skeleton of bone. Bridges of extra bone develop across the joints, progressively restricting movement and leading to eventual immobility. The disease is caused by a point mutation in the gene encoding the ALK2 receptor, rendering it overactive. Researchers estimate that there are approximately 3,000 individuals living with FOP worldwide.
About the IFOPA
Founded by Jeannie Peeper in 1988 to end the isolation formerly associated with FOP, the IFOPA is a registered 501(c)(3) organization that has evolved into the world’s leading non-profit resource for FOP and today has members from over 50 countries. The IFOPA’s programs and services are focused in four primary areas, including research, education, support programs for FOP members/families and global advocacy. The organization celebrated its 25th anniversary in 2013 and has raised more than $16 million in resources for its objectives. Find out more at www.ifopa.org.
