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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:
Learning Objectives:
By the end of the webinar, participants will be able to;
Christian Lopez is an implementation science researcher focused on improving the integration of person-centred care interventions into routine cancer care. His research expertise lies at the intersection of implementation science, patient-reported outcome measures (PROMs), and cancer rehabilitation and survivorship.
He recently completed his PhD at the University of Toronto, conducting his research with the Cancer Rehabilitation and Survivorship Program at the Princess Margaret Cancer Centre. His work focuses on applying implementation science to support the integration of PROMs into routine cancer care, using theories, models, and frameworks to understand barriers, guide strategy design, and evaluate implementation outcomes.
Fees:
We hope you’ll join us for this powerful and timely conversation.
Webinar access details will be provided in the registration confirmation email. Pending quality of the recording, this webcast will be available within 30 days of the live webinar.
If you are not a current member of CAPO, find out more about membership by going to https://capo.ca/apply
As we stand at a new horizon in psychosocial oncology, we recognize the unprecedented opportunities to expand both access to and impact of comprehensive cancer care. This conference will explore innovative strategies for breaking down traditional barriers that have historically limited access to psychosocial support, including geographic isolation, resource constraints, cultural disparities, and systemic inequities in healthcare delivery.
This expansion of reach and influence represents not merely growth in service numbers, but a fundamental transformation in how we conceptualize, design, and implement patient-centered psychosocial care across diverse communities and care settings. We will explore scalable solutions that amplify impact while maintaining the deeply personal, human-centered approach that defines excellence in psychosocial oncology. From telehealth innovations and peer support networks to community-based interventions and integrated care models, this conference will showcase evidence-based strategies that expand our collective ability to support individuals and families navigating the cancer journey, wherever they may be.
The CAPO 2026 conference will run from June 8 to 9, in person at the Sheraton Hotel, Newfoundland.
All fees are NOT subject to tax - CAPO is a charity and does not charge tax.
Early Bird pricing ends April 10, 2026
Monday, June 8, 2026
6:30 to 9 p.m., Spirit of NL Productions, Theatre Gower, 208 Gower Street, Newfoundland, A1C 1R2
Come join us for an award-winning dinner and show experience!
A three-course dinner followed by Newfoundland Screech Cake, the Spirit of Newfoundland’s Signature Dessert! Slices of moist and delicious bundt cake infused with Newfoundland Screech rum with hints of vanilla, soaked in a rum glaze!
Registration includes dinner and the show.
Advanced registration is required.
Fee: $110
CAPO is a registered charity and does not charge tax.
CAPO Conference Dinner & Show event
THE NEWFOUNDLAND ‘N’ LABRADOR SHOWCASE is an original 55-minute comedic showcase emceed by one of Spirit of Newfoundland’s irreverent performers and featuring our talented cast and the Spirit of Newfoundland Band. It’s a full immersion into the music and stories of Newfoundland that represent our unique culture. It’s a real Newfoundland time.
So, what’s a “time”, you ask! Well, a time is one of those experiences that leaves audiences saying things like, “The man next to me laughed so hard his teeth fell out!” Seriously. A time is an absolutely fabulous social and cultural experience. And it always features:
A three-course dinner followed by:
Registration includes dinner and the show. Drinks are extra, and you will be billed separately for these.
Expected Attendees: 175 +
Promoted to over 4,000 contacts via email and social media.
It is our hope that your organization will be part of improving excellence in psychosocial care and the quality of life of individuals with cancer and their families by joining us at the 41st Annual CAPO Conference in St. John’s, NL, Canada. Our theme this year is “A New Horizon: Expanding the Access and Impact of Psychosocial Oncology”. We are anticipating 175 to 200 attendees from across the country and internationally.
Canadian Association of Psychosocial Oncology (CAPO)
189 Queen Street East, Suite 1 Toronto, ON M5A 1S2 P. 416-968-0207 [email protected]
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