La fibrosis quística (FQ) es una enfermedad genética. Escuche las presentaciones de los expertos, el Doctor Fadel Ruiz, director del centro de fibrosis quística de Baylor y el Doctor Carlos Milla, director del centro de fibrosis quística de Stanford y sus respuestas a las principales preguntas de la comunidad sobre terapias genéticas para la FQ. El panel fue moderado por Sylvia Mazuera, madre de dos hijos, el menor de los cuales tiene FQ.
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Each year, hundreds of volunteers from across the country participate in advocacy events that help state and federal policymakers and decision-makers understand the complexities of living with cystic fibrosis and the importance of having access to affordable, adequate care and supporting research and drug development.
Our federal and state advocacy efforts support our mission of ensuring that everyone with cystic fibrosis has access to high-quality, specialized care. We evaluate policies and legislation through one lens: How would this impact people with CF and their families?
By educating elected officials and other government decision-makers on the needs of the cystic fibrosis community, the Cystic Fibrosis Foundation works to shape public policy to help our efforts to cure CF and provide all people with CF the opportunity to live full, healthy lives. Below find a listing of our state and federal statements, letters, and regulatory comments.
CF Foundation letter thanking the California Department of Health Care Services for including certain CF medications on the state's list of medications eligible for extended duration prior authorization under Medi-Cal Rx and requesting the inclusion of additional medications to that list.
Ad hoc coalition comment letter to HHS opposing a proposal to implement Medicaid work requirements in Arkansas.