From persistence to policy: Breaking barriers in rare cancers care
Wednesday, March 18, 12 to 1:30 p.m. ET
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 share 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 will 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 will explore 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. Speakers will examine how targeted testing, patient registries, research navigation, and outcome monitoring can form a scalable model applicable across all rare cancers. The discussion will also situate rare cancers as a critical pillar of Phase 2 of Canada’s Rare Disease Drug Strategy, highlighting practical, implementable solutions to improve equity, access, and sustainability.
A live Q&A will follow the discussion, giving you the chance to engage directly with our panelists.
Moderator: Samar Attieh
Featuring:
Nicolas Bergeron (46) and Noémie Cloutier (41) have been partners for nearly 22 years and were married in May 2025. Nicolas proposed at Christmas 2024 during a hospitalization, with the quiet support of his medical care team. Nicolas worked as an elevator mechanic starting at the age of 19, a trade passed down from his grandfather. His work brought him across vast and remote regions of Quebec, including Hudson Bay communities and Nunavik. Noémie is a high school French teacher. 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. Following a prolonged hospitalization and the placement of three external biliary drains, he was able to begin treatment in December 2024. Since the diagnosis, both Nicolas and Noémie have been on medical leave. Having previously faced infertility, they built their family around their two energetic Border Collies. Today, Nicolas and Noémie focus on living day by day, preserving meaningful moments together, and holding onto hope for more time and access to promising new treatments. Nicolas is also involved as an ambassador for OQPAC, and when their energy allows, they participate in public awareness initiatives and advocacy activities to help bring visibility to cholangiocarcinoma and the realities faced by families living with rare cancers
Durhane Wong-Rieger: 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, and President of the Institute for Optimizing Health Outcomes and Chair of Canadian Heart Patient Alliance. Durhane is immediate Past-Chair of the Rare Disease International and Treasurer of the WHO NGO on Rare Disease. She is a member of several advisory boards and committees, including Co-Chair of the Implementation Advisory Group for Canada’s Strategy on Drugs for Rare Diseases. She has a PhD in psychology from McGill University.
Leonard Angka: Leonard is the Project Manager for the Canadian Cholangiocarcinoma Collaborative (C3), where he leads national efforts to improve access to care and research opportunities for Canadians living with biliary tract cancers. He oversees C3’s multi-institutional programs, including the national patient registry, molecular testing initiatives, and C3-led clinical trials, and works closely with clinicians, researchers, and patient partners across Canada. He is actively engaged in patient-centred advocacy and is passionate about ensuring equitable and timely access to care.
Presented in partnership with:
