From Unmet to Unforgettable: Inside CHES’s Approach to Patient Programs that Stick

Patient Advocacy Voices

Patient Advocacy Voices
From Unmet to Unforgettable: Inside CHES’s Approach to Patient Programs that Stick
Aug 21, 2025 Season 2 Episode 7
Sanofi US Patient Advocacy

Successful patient advocacy groups often start with a simple but powerful question: What do our patients need that no one else is delivering? The CHES Foundation took this approach head on, turning gaps in care, education, and belonging into innovative, measurable programs for the rare bleeding disorders community.

In this episode, host Eric Racine and co-host Jane Smith sit down with Janet Brewer, Co-Founder & Executive Director of the CHES Foundation, to explore how CHES builds solutions that address true unmet needs of patients and caregivers. Janet shares how her personal journey shaped an approach to meet people where they are, listen deeply, and create programs they’ll never forget. From launching a unique camp for inhibitor patients and families, to making learning fun through disco bingo trivia at conferences, CHES reimagines how advocacy organizations can educate and empower communities.

In this episode you’ll find practical insights on how to: 

  • Listen to what patients and families really need and turn it into creative, data-driven programs 
  • Design experiential education that is memorable and measurable
  • Deliver impact for populations that lack solutions – learning from CHES solutions for children with inhibiters, women and girls with bleeding disorders, and people with ultra rare bleeding disorders
  • Continually improve by acting on program data and community feedback 

This episode is a powerful look at what happens when education and support is designed not just for patients but with them, offering relevant takeaways for leaders working in any therapeutic area. 


Episode Artwork From Unmet to Unforgettable: Inside CHES’s Approach to Patient Programs that Stick 25:34 Episode Artwork Culture Change: What Leaders Need to Know to Help Improve Mental Health in Their Organizations and Communities 29:36 Episode Artwork How to Close the Gap Between Scientific Innovation and Patient Access in the U.S. Healthcare System 24:28 Episode Artwork Building Awareness, Driving Change: Inside APFED’s Strategy for Rare Disease Advocacy 37:10 Episode Artwork How the Shifting U.S. Health Policy Landscape is Impacting the Patient Community 22:29 Episode Artwork Scalable Solutions: How the American Lung Association Evolves to Meet the Needs its Community 26:49 Episode Artwork Springboard to Season 2: How Advocacy Leaders Make a Difference for Patients, Science, and Policy 46:10 Episode Artwork How to Innovate and Collaborate to Advance Patient-focused Priorities – The National Health Council 22:12 Episode Artwork How Might We? How Fresh Perspectives Can Change Outcomes in Overlooked Conditions 27:02 Episode Artwork Transforming the Pace of Medicine Development Through Partnerships with the Patient Advocacy Community 31:50 Episode Artwork Taking a Business Approach to Advocacy and Philanthropy - How a Venture Philanthropist Invests to Impact Peoples’ Lives 16:36 Episode Artwork Long-Term Impact: Aggregating Data to Accelerate Innovations for Patients 14:06 Episode Artwork An Advocate's Journey to Put Patients at the Forefront of Research 13:36 Episode Artwork Building a Leader: How to Grow with Your Patient Advocacy Group 21:29 Episode Artwork The First Cancer Center on Native Land – From Promise to Reality 18:25 Episode Artwork Many Voices, One Goal: The Power of Alliances 20:51 Episode Artwork Capturing Data to Evaluate and Communicate Impact 17:40 Episode Artwork How to Create Partnerships That Build Trust and Deliver Outcomes 15:12 Episode Artwork Patient Advocacy Voices – Trailer 1:36