Welcome to our Events Calendar! Stay up-to-date with the latest happenings in the rare disease community in Canada and beyond. From webinar and conferences to workshops and other events, our calendar is your one-stop destination for all rare disease-related happenings. Explore upcoming events, mark your calendar, and join as we work together to make a difference in the lives of those affected by rare diseases.
Watch our walkthrough videos in English and French for guidance navigating the calendar HERE.
IMAGINE spending years, or even your entire life, trying to figure out what is wrong with you while being told “it’s all in your head”. The Ehlers-Danlos Syndromes (EDS), are complex connective tissue disorders that are frequently misunderstood and stigmatized within the healthcare system. This Canadian documentary explores the difficult reality of living with EDS, focusing on […]
Join SCAGO for an informative virtual session on Novel Therapies in Sickle Cell Disease Pain Management: What Patients and Families Should Know.
The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future.
This webinar kicks off a new joint EU4Health webinar series on paediatric and orphan devices! Three EU4Health projects, i4Kids4Rare, DeCODe, and OrphaDev4KIDS have joined forces to deliver a series of expert webinars on planning, regulation, and clinical pathways for paediatric and orphan devices.
This conversation will explore how patient and clinician perspectives are integrated into HTA evidence frameworks, how these insights influence decision-making in practice, and where opportunities remain to build more responsive and inclusive systems for rare disease communities.
Join NMD4C and Muscular Dystrophy Canada at their next CPD-accredited webinar, “Neuromuscular Mystery Case Rounds,” on Tuesday, June 2nd, 2026 at 5:00 p.m. ET, with their speaker, Dr. Albert Yeung, Neuromuscular Clinical Fellow at the University of Alberta. This session will be chaired by Drs. Aaron Izenberg, Shafina Sachedina and Christen Shoesmith.
Join the Consulate General of Canada in Boston for an exclusive program showcasing the strength and momentum of Canada’s genomics and life sciences ecosystems.
The summit is an international conference meant to highlight the latest science at the crossroads of brain and heart health, showcasing innovation and state-of-the-art research.
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 […]
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. […]
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 […]
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