Canadian Rare Disease Network

CORD Webinar: From Genomic Testing Readiness to Rare Disease System Readiness
2026-06-23 12:00 - 13:00 (America/Toronto)
Join Durhane Wong-Rieger (CORD) and Don Husereau (University of Ottawa) for a discussion on moving from genomic testing readiness to rare disease system readiness and shaping the next phase of Canada’s Rare Disease Strategy

CIHR: Information Webinar for Canadian applicants to the ERDERA Clinical Trial Call 2026
2026-07-07 10:00 - 11:00 (America/Toronto)
CIHR is hosting an information session to provide interested Canadian applicants with information on the requirements of the “ERDERA Clinical Trial Call 2026 (ECTC 2026)” funding opportunity and to answer questions on how to apply.

Spastic Paraplegia Foundation (SPF) TALKS w/ Dr Ziv Gan-Or/Neuro and Linda Lafontaine
2026-07-08 11:00 - 12:00 (America/Edmonton)

IMPaCT Webinar: Responsible Research Practices: How Reporting Guidelines Can Improve Child Health Trials
2026-07-09 12:00 - 13:00 (America/Toronto)
Register today for IMPaCT’s next webinar with Ami Baba, PhD, where she’ll discuss Responsible Research Practices: How Reporting Guidelines Can Improve Child Health Trials.
✅ Identify who needs trial reporting guidelines
✅ Introduce pediatric-specific reporting guideline extensions for trials and systematic reviews
✅ Describe how SPIRIT-C, CONSORT-C, TIDieR-C, and PRISMA-C can impact both upstream and downstream research processes

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.

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.

SickKids: Neurovascular Family Education Day 2026
2026-09-19 09:00 - 14:00 (America/Toronto)
Please join SickKids for an educational event for patients, families, and care-givers featuring expert speakers on Moyamoya Disease.

Defeat Duchenne Canada: Family Forum 2026
2026-10-03 08:00 - 2026-10-04 17:00 (America/Toronto)
Hosted in partnership with IWK Health Centre and the Stan Cassidy Centre for Rehabilitation, this year’s Family Forum is designed to be a destination experience for the Duchenne community. Families from across Canada will come together to learn from leading experts, share experiences, and build lasting friendships with others who understand the journey.

Kids Brain Health Network (KBHN) Annual Conference
2026-10-18 08:00 - 2026-10-20 17:00 (America/Edmonton)
Save the Date!
Kids Brain Health Network (KBHN) is thrilled to announce the return of their Annual Conference, happening October 18–20, 2026, in Calgary, Alberta!

Inaugural Canadian Gene & Cell Therapy Conference
2027-01-25 08:00 - 2027-01-26 17:00 (America/Toronto)
Convened by RareKids-CAN in partnership with the Conference Organizing Committee, the conference will bring together researchers, clinicians, manufacturers, industry leaders, regulators, trainees, and patient and family partners from across the full translational pipeline.
