Canadian Rare Disease Network

Rare Diseases International-Global Perspectives on Rare Disease Centers: What We Learned from Case Studies
2026-03-18 07:00 - 08:00 (America/Edmonton)
Join RDI for a public webinar exploring how rare disease centers are organized and how they function in practice across different countries and health system contexts. Rare disease centers play a critical role in improving diagnosis, care coordination, research, and access to treatment for people living with rare diseases. Yet, their structures, levels of recognition, funding models, and integration into national and international networks vary widely. To better understand this diversity, Rare Diseases International (RDI) conducted a series of qualitative case studies of selected rare disease centers worldwide. This public webinar will present key insights from the case studies. Through a panel discussion with representatives from participating centers, the session will reflect on shared enablers and barriers and highlight practical lessons learned.

MAINFRAME Symposium on AI-Driven Small-Molecule Drug Discovery
2026-03-18 08:00 - 2026-03-19 17:00 (Europe/Rome)
Co-organized by Conscience in partnership with The Structural Genomics Consortium (SGC) and local organizers at the Vall d’Hebron Institute of Oncology (VHIO), the Barcelona Supercomputing Center (BSC), and the Institute of Research in Biomedicine (IRB), this two-day in-person symposium will bring together the global community working at the intersection of artificial intelligence, computational chemistry, and small-molecule drug discovery.

People's Perspectives: Living with Loeys-Dietz Syndrome
2026-03-19 19:00 - 20:00 (America/Toronto)
For the first time, the Loeys-Dietz Syndrome Foundation Canada and the Loeys-Dietz Syndrome Foundation – a division of the Marfan Foundation – are joining forces to bring you real talk about LDS from those with lived experience. Join four community members – two from the United States and two from Canada – for this dynamic moderated discussion.

4th Annual Scientific Symposium on SPG4
2026-03-25 08:00 - 2026-03-27 17:00 (America/Toronto)
The premier gathering for childhood-onset SPG4 research returns in 2026 — uniting leading scientists, clinicians, industry innovators, patient advocates, and families for three days of focused collaboration. Designed to accelerate the path from discovery to treatment, the symposium will feature experts from across the U.S. and abroad, offering a rare opportunity to share knowledge, align priorities, and drive progress.

Gene Therapy for IEI: It's Taken Us So Long 'Cause We've Got So Far To Come
2026-03-25 10:00 - 12:00 (America/Edmonton)
Moderated by Dr. Jordan Orange, this important conversation will explore the progress, promise, and future of gene therapy for Inborn Errors of Immunity.

Ehlers-Danlos Syndrome (EDS) Research Symposium
2026-04-09 08:00 - 2026-04-10 17:00 (America/Edmonton)
The Ehlers-Danlos Syndrome (EDS) Research Symposium is a two-day event, April 9-10, designed to bring together clinicians, researchers, students, patients, and community partners to examine current research, clinical challenges, and emerging approaches to the diagnosis and management of the Ehlers-Danlos syndromes.⁠
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Wilson Disease Association Spring Support Symposium
2026-04-11 08:00 - 17:00 (America/Edmonton)
Join the WDA Spring Support Symposium in Ann Arbor, Michigan, on April 11, 2026, to hear directly from patients and a caregiver as they share their real-life stories.

3rd Symposium on Autoinflammation and Immune Dysregulation: “Celebrating Autoinflammation: On the Shoulders of a Giant
2026-04-16 08:00 - 2026-04-17 17:00 (America/Toronto)
This 3rd NIH Symposium on autoinflammatory and immunedysregulatory diseases marks a unique occasion to honor Dr. Dan Kastner, the founding father of autoinflammation, for his invaluable contributions in establishing and advancing the field.

Innovative Financing for Rare Diseases
2026-04-23 05:00 - 06:00 (America/Edmonton)
How can innovative financing approaches improve equitable access to diagnosis, treatment, and care for people living with rare diseases?
Join RDI-International for a new webinar series bringing together health economists, policymakers, patient advocates, and payers. Through a multistakeholder dialogue, this series will examine key financing gaps and barriers to access, map these challenges to relevant innovative financing mechanisms, discuss enabling conditions for implementation, and inform policy and advocacy actions.

Ehlers-Danlos Society: Biobank Research Event
2026-05-04 08:00 - 2026-05-08 17:00 (America/Los_Angeles)
This initiative supports research into the different types of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) by collecting biological samples and health information from people with and without these conditions. ⁠

International Drug Repurposing Conference 2026
2026-05-12 08:00 - 2026-05-13 17:00 (Europe/Brussels)
Join the leading international drug repurposing conference to explore the future of patient-centric medicines repurposing.
From rare diseases and AI-driven drug discovery, to policy, funding and community-led success stories, iDR26 brings together the global drug repurposing community to navigate the next chapter in maximising patient benefit.

Rare Diseases International: A Catalyst for Global Health Transformation
2026-05-20 10:00 - 11:30 (America/Edmonton)
Bringing together policymakers, patient advocates, industry leaders, researchers, and global health institutions, the event will explore how rare diseases can drive people-centered, equitable health systems.

ECRD: Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases
2026-06-02 08:00 - 2026-06-04 17:00 (Europe/Prague)
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.

Planning Orphan Device Development Using the GAITS Framework
2026-06-02 09:00 - 10:00 (America/Toronto)
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.

'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).

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.

RARE REV-inar episode 027 - Living with systemic mastocytosis
2026-06-26 07:00 - 08:00 (America/Edmonton)

ERDERA Clinical Trial Call 2026: Information Webinar
2026-07-06 07:00 - 09:00 (America/Edmonton)
ERDERA will host an informational webinar on 6 July 2026. During this session, participants will have the opportunity to hear directly from ERDERA experts, who will present the objectives, scope, and requirements of the call, and address questions from prospective applicants.

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.

Dysautonomia International: Piece by Piece: Building the Future of Dysautonomia Care
2026-07-09 08:00 - 2026-07-12 17:00 (America/Chicago)
Join Dysautonomia International in Houston, Texas, July 9–12, 2026 for the 14th Annual Dysautonomia International Conference, the world’s largest conference on autonomic disorders.

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.

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.
