Advocacy
The Boomer Esiason Foundation is a patient advocacy leader for the cystic fibrosis community, fighting to give patients and families a voice. The Foundation believes strongly that all CF patients, and other rare disease patients, deserve equitable access to healthcare and access to life-changing drugs, the ability to critique the cost of healthcare, and the right to defend their own needs. The Foundation seeks to serve as a leader on all of these fronts with its commitment to people with CF and their families.
Learning Library
Policy and Advocacy Fellowship
BEF’s Policy and Advocacy Fellowship is an online program for college students and young adults designed to equip patient advocates with the tools, knowledge, and confidence to enhance their engagement in key policy and advocacy issues. In weekly meetings, fellows discuss key policy and advocacy topics such as antimicrobial resistance, shared decision-making in the clinic, and insurance benefit design. Fellows also write position papers and produce a capstone project on a topic of their choice.
Interested in participating? Reach out to mmarden@esiason.org
From our Fellows:
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Reforming Prior Authorization by Michael Woody
August 14, 2025 -
Antimicrobial Resistance by: Katherine Black
December 10, 2024 -
Shared Decision Making & Care Guidelines by: Mallory Holloway
December 10, 2024 -
The Value of Medicines and Who Decides It by: Kashvi Kapoor
December 10, 2024
COMING SOON: BEF Policy and Advocacy Self-Guided Course
Want to join waitlist? Reach out to mmarden@esiason.org
Clinical Trials: What to know
Clinical trials ensure that safe, effective medicines make it to the people who need them. We answer FAQs about clinical trials, feature videos from principal investigators, coordinators, and volunteers, and highlight opportunities to get involved.
BEF Statements
BEF Blog
Stories and insights from our CF community
BEF Eat Well Recipe Library
Recipes curated by our very own BEF Eat Well Ambassador Sarah Yourman Tota.
