Canadian Rare Disease Network

2025 Canadian Fragile X Conference
2025-11-07 08:00 - 2025-11-08 17:00 (America/Toronto)
November 7–8, 2025 | Toronto, Ontario Canada’s first national Fragile X conference

TSF's Toronto Patient Day for Rare Neuroinflammatory Disorders
2025-11-08 11:00 - 17:00 (America/Toronto)
TSF is inviting patients and caregivers impacted by rare neuroinflammatory disorders from all over Canada to join us!

3rd Edition on International Neurology Conference 2025 in USA
2025-11-15 08:00 - 2025-11-16 17:00 (America/New_York)

Pan-Canadian OMOP Common Data Model Engagement Event
2025-11-17 08:00 - 2025-11-18 17:00 (America/Toronto)
This pan-Canadian event brings together teams using the OMOP common data model to advance research collaboration across Canada and beyond.

ITINERARE Symposium 2025
2025-11-18 08:00 - 17:00 (Europe/Zurich)
The programme features experts from a variety of fields, ranging from basic and translational research to clinical application and the ethical, social and legal aspects of rare disease research.

CARELeuko Symposium 2025
2025-12-05 08:00 - 17:00 (America/Toronto)
The Canadian Association for Research Excellence in Leukodystrophy (CARELeuko) is excited to welcome you to the 2025 CARELeuko Symposium: Uniting Canada’s Leukodystrophy Community to Drive Collaboration and Accelerate Research and Care!
The 2025 CARELeuko Symposium is taking place on Friday, December 5, 2025, at the Research Institute of the McGill University Health Centre in Montreal, Quebec, Canada.

36th International Symposium on ALS/MND
2025-12-05 08:00 - 2025-12-07 17:00 (America/Los_Angeles)
The International Symposium is the biggest annual conference dedicated to ALS and MND research. Each year they bring together researchers from around the world to share new understanding of amyotrophic lateral sclerosis and motor neurone disease.

FA Together: Learn. Share. Connect. mini-regional conference in Calgary
2025-12-08 17:00 - 19:00 (America/Edmonton)

SMA Together: Learn. Share. Connect. A Mini-Regional Conference - Toronto
2025-12-13 11:00 - 14:00 (America/Toronto)
The SMA Together: Learn. Share. Connect. Mini-regional conference in Toronto is less than three weeks away! Join them, in-person on December 13 to learn about the latest updates in spinal muscular atrophy, including:

8th TREAT-NMD® International Conference – Lisbon, 2026
2026-02-10 08:00 - 2026-02-12 17:00 (Europe/Lisbon)
Join TREAT-NMD at this vital, in-person gathering where patients, clinicians, researchers, industry, and regulators come together to tackle the biggest challenges in neuromuscular treatment development, diagnosis and care. Topics will include; disrupted clinical trial delivery, regulatory uncertainty, global access inequalities and shrinking public funding, they’ll tackle these themes with a holistic, solutions-driven approach and a patient centric and global focus.

Rare Disease Day 2026: Advancing the Rare Brain Disease Ecosystem
2026-02-24 09:00 - 16:00 (Europe/Brussels)
Placing brain health at the core of rare brain disease prevention and management, this event gathers multidisciplinary experts from research, clinical care, patient advocacy, and industry to share perspectives and priorities on the rare brain disease research, care, and policy space. The meeting will focus on reviewing key developments in regulatory frameworks and discussing strategies to advance the RBD Ecosystem and develop a comprehensive Knowledge Hub.

Massey College: Rare Disease Day
2026-02-27 12:00 - 13:30 (America/Toronto)
This Rare Disease Day, Massey College is the Massey community to join us for a special Fireside Chat on an issue that touches more lives than many realize.
Lindy Forte, Mai K., Catherine Stratton, MPH, and Ian Stedman will share brief opening reflections from their respective perspectives on rare diseases. Together, they’ll explore how we can move beyond viewing rare diseases as isolated diagnoses and instead recognize them as part of one heterogeneous community united by shared experiences. The discussion will also highlight some of the most pressing challenges in the rare disease space today.

EP PerMed Hackathon
2026-03-03 08:00 - 2026-03-04 17:00 (America/Guadeloupe)
This is your chance to be a part of an immersive event at the forefront of innovation in personalised medicine. Join ER PerMed and work together with experts, innovators, and visionaries to shape the future of healthcare.

Rare Disease Summit: Access USA
2026-03-17 08:00 - 2026-03-19 17:00 (America/Edmonton)
The Rare Disease Summit unites stakeholders to accelerate therapeutic innovation for areas of unmet medical need. Gain actionable insights on launch planning, market access, reimbursement strategies and strategic partnerships to optimize rare disease commercialization and elevate patient impact.

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.

RAREDIG McGill: Rare Disease Day 2026
2026-03-18 16:30 - 19:30 (America/Toronto)
McGill’s RareDIG is excited to welcome you to the eighth edition of Rare Disease Day! Millions of individuals are affected by rare diseases worldwide and Rare Disease Day is hosted in support of these patients and family members.

Students, researchers, physicians, patients, and community members will meet at Jeanne Timmins Amphitheatre at The Neuro (Montreal Neurological Institute-Hospital) in Montreal on March 18th to discuss the challenges faced by people with rare diseases, research and advocacy efforts. Poster presentations will also be prepared by student researchers with a keen interest in making a difference in the rare disease field.

MitoRevolution Research Symposium and Innovation Day
2026-04-09 08:00 - 17:00 (America/Toronto)
Researchers, clinicians, and trainees working in mitochondrial science are invited to attend the 6th Annual MitoRevolution Research Symposium and Innovation Day, hosted by their partners Mito2i, on Thursday, April 9, 2026, at the MaRS Auditorium in Toronto.

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.

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.

Voices for Rare Advocacy Day
2026-05-13 07:30 - 09:30 (America/Toronto)
A day dedicated to bringing the voices of Ontario’s rare disease community directly to policymakers.

15th edition of the International Myotonic Dystrophy Consortium (IDMC-15)
2026-05-26 08:00 - 2026-05-30 17:00 (Asia/Karachi)
The event will now make a stop in Canada, in the picturesque and warm Saguenay—Lac-Saint-Jean region of the province of Quebec.
A unique opportunity to network and share advances and initiatives in myotonic dystrophy research! Take advantage of this not-to-be-missed event!

2026 Children’s Healthcare Canada Annual Conference, “Tomorrow’s Promise, Today’s Plan: Transforming Children’s Healthcare in Canada”
2026-05-31 08:00 - 2026-06-02 17:00 (America/Edmonton)
May 31-June 2

Canadian Genomics Innovation Showcase
2026-06-02 16:00 - 20:00 (America/Toronto)
​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.

Brain-Heart Interconnectome (BHI) State of the Science Summit
2026-06-08 08:00 - 2026-06-10 17:00 (America/Toronto)
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.

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.

RareKids-CAN: Kids Rare Disorders Awareness: Supporting Early Recognition & Families in Nova Scotia
2026-06-27 13:00 - 14:00, 2026-08-29 10:00 - 11:00 (America/Halifax)
Join RareKids-CAN Clinical Trial Navigator Ameen Abdelmajid of the IWK Health for a series of community information sessions in partnership with Halifax Public Libraries.
These free sessions are designed for families, caregivers, and community members interested in learning more about pediatric rare diseases, the diagnostic journey, available supports, patient advocacy resources, and opportunities to participate in research and clinical trials.
📍 Multiple Halifax Public Library locations throughout June and August

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.

Sickle Cell Awareness Group of Ontario: Annual Summit 2026 Registration
2026-08-14 08:00 - 2026-08-15 17:00 (America/Toronto)
Join SCAGO for an educational two-day summit bringing together researchers, clinicians, advocates, and community members all working to transform sickle cell care.

ACHRI: 2026 Maternal & Child Health Trainee Research Day
2026-08-18 08:00 - 17:00 (America/Edmonton)
Led by the Alberta Children’s Hospital Research Institute Trainee Association (ACHRITA) in partnership with the Owerko Centre and ACHRI, the event is open to undergraduate and summer students, graduate students, postdoctoral researchers, and PGME/clinical fellows.
