Webinar 4: From Readiness to Action

Aug 11, 2026

Final Webinar in CORD's 4 Part Summer Rare Disease Readiness Series

From Readiness to Action: The Capstone Consultation Before the Rare Readiness Scorecard Launch

📅 Tuesday, August 11, 2026
🕛 12:00 PM to 1:15 PM ET (Core program: 12:00 to 1:00 PM | Optional action discussion: 1:00 to 1:15 PM)

Canada has made important progress in rare disease diagnosis, treatment and access, but how well does the system work for patients in practice?

Join CORD for the final webinar in our 4 Part Summer Rare Disease Readiness Series, an interactive consultation that will help shape the forthcoming Rare Readiness Scorecard.

Panelists:

Mitch Moneo – Policy/Payer Expert

Tania Stafinski – University of Alberta; Policy/HTA Expert

Kim McBride - University of Calgary; Genetics Expert

Rachel Brothers– ATTR-CM Patient/Advocate

Catherine Boivin – SMA Patient/Advocate
Sara Ethier- CORD Board/Patient Advocate

Farah Jivraj – Biogen; Industry Expert

Moderators:

Bill Dempster – 3Sixty Public Affairs Inc.

Durhane Wong-Rieger – Canadian Organization for Rare Disorders

Using ATTR cardiomyopathy and spinal muscular atrophy as case studies, a live panel of patients and caregivers, health professionals, policy experts, data specialists and industry representatives, together with audience participants, will assess Canada's readiness across:

• Recognition, diagnosis and referral
• Timely and equitable treatment access
• Provincial implementation
• Integrated care
• Data, outcomes and accountability
• Priorities for the next phase of the Rare Disease Drug Strategy

Through live polling and discussion, you'll help identify what Canada should measure, where the biggest gaps remain, and what actions are needed to improve patient access.

Your voice matters. The findings will help refine national, provincial and disease specific Rare Readiness Scorecards and inform recommendations for RDDS Phase 2.