This is a special episode of Beyond the Thesis with Papa PhD, where we spotlight the inspiring transformation of one of Canada’s foremost patient advocacy organizations. In this off-series Podcasthon 2026 episode, guest host Fiona Robinson, a medical writer and editor specializing in inheritable bleeding disorders, sits down with Sarah Ford, Chief Executive Officer of the Canadian Hemophilia Society (CHS).

Together, they explore the CHS’s exciting journey as the organization embarks on a significant rebranding - from its decades-long identity to the new name, Bleeding Disorders Canada / Troubles de la Coagulation Canada. You’ll hear how this change reflects a broader commitment to supporting all individuals and families affected by inheritable bleeding disorders, including hemophilia A and B, von Willebrand disease, and rare factor deficiencies, platelet disorders, women and girls with bleeding disorders, and people without a diagnosis.

Drawing from community consultations and strategic planning, Sarah shares insights into honoring the organization's 70+ year legacy - including hemovigilance advocacy post-Krever Report - while expanding bilingual education on gene therapy, novel treatments, and shared decision-making with providers through 10 provincial chapters.

You’ll learn:

The community-driven process behind the inclusive rebrand and seamless transition at hemophilia.ca (redirecting post-June 2026)
How CHS plans to grow programs meeting people "where they're at," from new diagnoses to underserved groups
Why advocacy must expand to protect multidisciplinary care systems - and how donations sustain this vital work
Simple ways to volunteer, donate, access resources, and connect via provincial chapters and treatment centers
The "for the community, by the community" model powering future innovations in bleeding disorders support

This conversation sheds light on how Bleeding Disorders Canada aims to meet the needs of a diverse and growing community while maintaining strong ties to its roots and continuing to play a vital role in national healthcare advocacy and hemovigilance. How can you support this evolution through action today?

🌐 Canadian Hemophilia Society (CHS)
➡ https://hemophilia.ca

🎧 Listen now, donate today, and share to help a charity transforming bleeding disorders care in Canada.