From persistence to policy: Breaking barriers in rare cancers care
Wednesday, February 25, 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.
This webinar features a moving testimony from someone living with cholangiocarcinoma, sharing her experiences to show how individual advocacy, leaning on community support, and holding onto rebellious hope can change everything.
Her testimony 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.
This webinar will feature one patient's exceptional journey for access. But it is also a call to build systems that no longer require exceptionality. A live Q&A will follow the discussion, giving you the chance to engage directly with our panelists.
Moderator: Samar Attieh
Featuring:
Cynthia Mitchell: Cynthia Mitchell has been living with cholangiocarcinoma since 2021. As a dedicated partner and advocate for the Canadian Cholangiocarcinoma Collaborative (C3), she focuses on raising awareness about this rare cancer and building community across Canada. Cynthia is passionate about making molecular testing and relevant therapies accessible to everyone, striving to improve outcomes for patients and their families. Her advocacy work is driven by a commitment to education and support within the cholangiocarcinoma community.
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:
