Our flagship advocacy effort – Many Voices ~ One Voice Campaign focuses on educating and engaging those impacted by CF, the general public and legislative sectors to broaden understanding of the challenges faced by the cystic fibrosis community.
Advocacy and awareness initiatives educate and engage not only those impacted by CF, but the general public and varied healthcare and legislative sectors. These campaigns and events help spread awareness of the challenges faced by the CF community, and provide tools to encourage access to therapies and quality care.
Living with CF presents a multitude of challenges – physical, emotional, and financial. Hence, barriers to medical care and therapies must be reduced; and funds to find a cure for CF must be raised.
Our advocacy and awareness programs aim to:
- Integrate the national community and legislative advocacy to clarify community needs, prevent loss of resources and reduce barriers that broaden access to vital services.
- Build and strengthen coalitions of national CF agencies and community members to increase state and national awareness of CF and issues that impact quality of life.
- Educate the CF community, the general public, and legislative sectors about the disease and the impact of its rare disease status.
- Track national and state legislations important to CFRI as an organization and individuals with CF, including increased access to treatments and services, and increased funding for CF research.
- Serve as a trusted resource throughout the nation’s federal and state legislative, executive, and administrative bodies, while focused on disease education, implications of rare disease status, and access to treatments, co-pays, and cost sharing.