The Foundation's plans include a $15 million, multiyear investment in developing a consortium of academic medical centers and laboratories dedicated to improving outcomes after lung transplantation.
The consortium will focus on improving delivery of lung transplant clinical care, increasing understanding of
The Foundation is also creating programs to better support people with CF and their families as they consider lung transplantation. For example, a mentoring program will connect individuals who are preparing to undergo transplantation with others who have experienced the transplantation process.
And through a collaboration with ORGANIZE, a nonprofit dedicated to making systems change in the organ donation space, the Foundation will focus on increasing the number of organ donors and decreasing lung transplantation waiting time.
The White House event was attended by Michael Boyle, M.D., senior vice president for Therapeutics Development, and Mary Dwight, senior vice president for Policy and Patient Assistance Programs at the CF Foundation. During a series of “innovation talks” at the summit, Dr. Boyle outlined the Foundation's commitments to improving lung transplantation for people with CF.
“For many people with cystic fibrosis and their families, lung transplantation is a very real possibility as the disease progresses,” said Dr. Boyle. “The Cystic Fibrosis Foundation is committed to improving the lung transplantation experience for people with cystic fibrosis and their families, and helping those who do require transplantation to live longer, healthier lives.”
According to the CF Patient Registry, approximately 200 people with CF had a lung transplant in 2014. During that same year, 182 people were accepted and on the waiting list for a lung, kidney, heart or liver transplant.