Canadian Rare Disease Network

Muscular Dystrophy Canada- Working Together to Build E-Learning in Rare Neuromuscular Diseases: Lessons from Arthrogryposis
2026-06-11 17:00 - 18:00 (America/Toronto)
Muscular Dystrophy Canada is excited to host a webinar on building e-learning in rare neuromuscular diseases.
The objectives of this session are as follows:

Recognize the key principles of knowledge co-development, including respectful partnerships between people with arthrogryposis multiplex congenita (AMC), families, clinicians, researchers, and organizations.
Understand the value of multidisciplinary teams that include people with lived experience in creating and sharing knowledge that is relevant and meaningful to AMC.
Understand how educational resources in rare neuromuscular diseases are developed to support clear communication, combining scientific evidence and lived experience through accessible and engaging e-learning approaches.
Reflect on how co-development can strengthen communication and trust between people with AMC and clinicians, and how these ideas can be applied in care, education, advocacy, or research.

Building on Progress: Charting the Future of Canada's Rare Disease Strategy
2026-06-12 10:00 - 11:00 (America/Edmonton)
Leading experts and advocates will convene to discuss the critical insights, challenges, and opportunities in advancing Canada’s National Rare Disease Strategy. Drawing upon key findings from a recent national study, panelists will delve into the economic burden, the profound impact of delayed diagnosis on patient journeys, and the imperative for improved pathways, access, and research. The aim is to generate actionable insights and solutions for a more effective and equitable rare disease landscape for all Canadians as we look ahead to 2027 and beyond.

RareKids-CAN Advanced Therapy Medicinal Products (ATMPs) series: ATMP Webinar: A Practical Primer for Clinical Coordinators, Nurses & Pharmacists
2026-06-15 13:00 - 14:00 (America/Edmonton)
Designed for clinical coordinators, nurses, pharmacists, and research staff working in pediatric rare disease trials, this introductory session will provide a practical overview of:
🔹 Gene therapies, cell therapies, and antisense oligonucleotides (ASOs)
🔹 How ATMPs differ from traditional therapies
🔹 Key operational considerations for clinical teams
🔹 Strategies for explaining ATMPs in clear, accessible language

PONDA Pop-up-Rare Care: What Care Support looks like for Patients and Families Affected by Rare Disease and Rare Diagnoses
2026-06-16 14:30 - 15:30 (America/Edmonton)

'Neuro-opthalmological presentations of ataxia and other rare neurological disorders' by Tatiana Brémovà-Ertl
2026-06-16 19:00 - 20:00 (America/Edmonton)
Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Regroupement québécois des maladies orphelines: NRGI - open science to understand common and rare neurological disorders
2026-06-17 10:00 - 11:00 (America/Edmonton)

Cystic Fibrosis Canada's 2026 Webinar: Spotlight on CF Research 2026
2026-06-17 12:00 - 13:30 (America/Edmonton)
Register now for Cystic Fibrosis Canada’s 2026 Spotlight on CF Research Webinar, offered in English and French with live simultaneous interpretation.

Rare Diseases International-Innovative Models Reshaping Access to Diagnosis, Treatment and Care - Practical examples and global case studies
2026-06-18 06:00 - 07:00 (America/Edmonton)
Scientific and medical advances in rare diseases continue to accelerate — but equitable access to diagnosis, treatment, and care remains out of reach for millions of people living with a rare disease.
This webinar offers a practical look at how innovative financing models can help close these gaps. The session will explore a range of financing mechanisms, including venture philanthropy, blended finance, public-private partnerships, solidarity funds, and outcome-based models. Through real-world examples, participants will gain insight into what makes these approaches work, the conditions needed for success, and how models can be adapted or combined across different health systems.

4th Edition of the Sickle Cell Awareness Day Education Conference
2026-06-18 08:30 - 17:00 (America/Toronto)
The Sickle Cell Disease Association of Canada (SCDAC), in partnership with the Interdisciplinary Centre for Black Health (ICBH), is bringing the sickle cell community together at the University of Ottawa for a one-day gathering of learning, collaboration and action.
This conference brings together patients, families, healthcare professionals, researchers, advocates, educators and caregivers.

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

17th International Symposium on Sjögren's Disease
2026-09-29 08:00 - 2026-10-02 17:00 (Europe/Paris)
This prestigious event, which brings together researchers, physicians, patients and experts from around the world to discuss the latest advancements in Sjögren’s disease.

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!
