Recording: From Persistence to Policy: Breaking Barriers in Rare Cancers Care

Recorded March 18, 2026 Targeted innovative therapies are offering new hope to individuals with rare cancers. Unfortunately, in Canada, timely access to testing and treatment requires advocacy and persistence from patients, families, clinicians, and advocates. But that should not be the case. In this webinar, Nicolas and Noémie shared their personal journey with cholangiocarcinoma, shedding light on the challenges they have encountered and underscoring the vital role of advocacy and research in advancing care for rare cancers. This shared experience set the stage for our panel discussion with leaders from national organizations, including the Canadian Organization for Rare Disorders (CORD) and the Canadian Cholangiocarcinoma Collaborative (C3). The panel discussion explored how Canada can move from reliance on individual efforts to a national, system-based approach for rare cancers to have better access to molecular testing and treatment options, while raising awareness of the current challenges rare cancers face in Canada. A live Q&A followed the discussion. Moderator: Samar Attieh Featuring: Nicolas Bergeron and Noémie Cloutier have been partners for nearly 22. In April 2024, Nicolas began experiencing unexplained abdominal pain. After months of delays in diagnosis, he was diagnosed in the emergency department on October 8, 2024, with stage IV metastatic Klatskin cholangiocarcinoma with peritoneal metastases and a KRAS G12R mutation. Nicolas is also involved as an ambassador for OQPAC. Durhane Wong-Rieger is the President and CEO of the Canadian Organization for Rare Disorders (CORD), President of the Asia Pacific Alliance of Rare Disease Organization, President of the Institute for Optimizing Health Outcomes and Chair of Canadian Heart Patient Alliance. Leonard Angka is the Project Manager for the Canadian Cholangiocarcinoma Collaborative (C3. He oversees C3’s multi-institutional programs. Presented in partnership with: C3 and CORD