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.