About the Conference

RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network Annual Conference

April 10-11th, 2025 / Hilton Garden Inn & Homewood Suites by Hilton - Ottawa, ON

About the Conference

The mission of the RareKids-CAN: Pediatric Rare Disease Clinical Trials and Treatment Network Strategic Planning Conference is to collaboratively shape the future of pediatric rare disease research and clinical trial capacity in Canada. By bringing together over 100 patient and family partners, researchers, sub-platform leaders, and key stakeholders, we aim to co-develop a shared vision that accelerates pediatric drug development and progress in clinical trials, improves treatment access, and strengthens national and international partnerships.

Conference Objectives

1. Strategic Planning

Develop a clear, actionable roadmap for the network’s strategic priorities over the next four years, with a focus on improving clinical trial readiness and advancing access to therapies for pediatric rare diseases.

2. Collaborative Brainstorming and Active Engagement

Facilitate a dynamic brainstorming session to foster meaningful engagement between patient and family partners, researchers, and network stakeholders. Identify opportunities to enhance patient- and family-centered approaches to rare disease clinical trials.

3. Multi-Stakeholder Collaboration

Engage representatives from the Executive Committee, International Advisory Board (IAB), CIHR, Health Canada, Canada’s Drug Agency, manufacturing facility partners, industry collaborators, and the rare disease research network to explore synergies and strengthen partnerships.

4. Knowledge Sharing and Network Growth

Facilitate dialogue around innovative models for clinical trials, regulatory pathways, and emerging manufacturing technologies to overcome barriers in pediatric rare disease research.

5. Building an Inclusive and Sustainable Future

Prioritize equity, inclusion, and sustainability across all strategic planning initiatives, ensuring diverse representation and meaningful contributions from all stakeholders.

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