Canadian Rare Disease Network

CORD Webinar: The Cost of Waiting: Socioeconomic Impact of Rare Disease in Canada
2026-07-14 10:00 - 11:00 (America/Edmonton)
CORD is pleased to invite you to our upcoming webinar, The Cost of Waiting: Socioeconomic Impact of Rare Disease in Canada . Join patients, caregivers, clinicians, researchers, policy makers and health system leaders for a conversation on the real-world impacts of delayed diagnosis and fragmented care, and what Canada can do to reduce the burden on families while building a more responsive rare disease system.

DNA2RNA: Generative AI to Predict and Engineer Human Tissues and Cells
2026-07-14 10:30 - 11:30 (America/Toronto)
Join D2R for this hybrid seminar with Professor Mo Lotfollahi from the Wellcome Sanger Institute and the Cambridge School of AI in Medicine at the University of Cambridge about “Generative AI to Predict and Engineer Human Tissues and Cells”.

Kabuki Syndrome Foundation Live Webinar: Together for Progress
2026-07-16 10:00 - 12:00 (America/Edmonton)
Join the Kabuki Syndrome Foundation at their upcoming live webinar, Together for Progress, on July 16, 2026. You can look forward to the latest updates on treatment development, learn about new resources for families and clinicians, and discover what’s next in their global efforts to improve the health of everyone with Kabuki syndrome.

RareKids-CAN: Delivering Gene Therapy Trials: Understanding Clinical Workflows, Operations, and the Patient Journey
2026-07-22 12:00 - 13:00 (America/Toronto)
Join RareKid-CAN on July 22nd for their second webinar in our ATMP series for research coordinators, nurses, pharmacists, investigators, and other clinical research professionals.
Their speaker Ana Stosic will provide a practical overview of the clinical workflows involved in delivering gene therapy clinical trials for pediatric rare diseases.

Health Canada Webinar: Real-World Evidence in the National Strategy for Drugs for Rare Diseases
2026-07-22 12:00 - 13:00 (America/Toronto)
This session is designed to provide you with a clear understanding of the goals, an update on progress, and the next steps as planning advances. It will include a short presentation from Health Canada followed by a Question & Answer session.

ERDERA Introductory Webinar: Situating ethics in the research continuum
2026-07-24 08:00 - 09:00 (America/Edmonton)
Join on 24 July for a free webinar and explore how ethics applies across different research activities, illustrated through a real-world case study that brings the concepts to life.

CORD Webinar: Building the Baseline: How Does Canada Measure Up in Terms of Rare Disease Readiness?
2026-07-28 10:00 - 11:00 (America/Edmonton)
Join CORD for an interactive 60-minute indicator lab exploring how Canada can measure progress in rare disease readiness. Together, experts and participants will examine and rate key policy and delivery indicators to identify what matters most, where data gaps exist, and what a national readiness baseline could look like. This session focuses on building a Canada-wide picture of rare disease readiness, not ranking provinces. Participants will help identify promising examples and shared opportunities for improvement as CORD develops a national readiness indicator inventory.

CORD: From Readiness to Action: The Capstone Consultation Before the Rare Readiness Scorecard Launch
2026-08-11 12:00 - 13:30 (America/Toronto)
Final Webinar in CORD’s 4-Part Summer Rare Disease Readiness Series

ALS Canada: ALS Research and Clinical Trials 101 Q&A Drop-In
2026-08-19 13:00 - 14:00 (America/Toronto)
This monthly Q&A drop-in session is available for people living with ALS, their families, caregivers, and anyone close to someone living with the disease who is seeking information or might have questions about ALS research and/or clinical trials

ALS Canada: Storytelling and Legacy Building for the ALS Community
2026-08-20 13:00 - 14:00 (America/Toronto)
Join ALS Canada for an inspiring panel on how people affected by ALS are sharing their lived experiences and turning their stories into meaningful legacies. Learn simple ways to document your journey, build connection through storytelling, and preserve your story for the future.
