Advocating on behalf of friends and family members with cystic fibrosis, more than 120 CF Foundation volunteers came together in the nation's capital to speak with their elected officials on behalf of friends and family members affected by the disease.
At a meeting hosted by the Cystic Fibrosis Foundation, private insurers, state Medicaid officials, care center providers, health experts and people with CF and their families came together to discuss innovative ways to continue improving high quality CF care on February 4.
William Elder, Jr., a medical student with cystic fibrosis and long-time advocate for the CF community, has been invited to sit with First Lady Michelle Obama at tonight's State of the Union address. The White House invitation highlights the momentum and progress toward finding a cure for this devastating disease.
Legislation introduced today will help more people with cystic fibrosis, and other rare diseases, participate in clinical trials without fear of losing important benefits or health coverage. The bill is sponsored by a bipartisan group of senators and legislators.