Events

Name: Kids Brain Health Network (KBHN) Annual Conference
Start: 2026-10-18T08:00:00-06:00
End: 2026-10-20T17:00:00-06:00

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.

February 2026
February 3 @ 5:00 pm - 6:30 pm

RealiseD Webinar 3: Single arm, RCT or something in between – how to enrich clinical trial design and analysis in rare diseases

Single-arm trials remain a cornerstone of rare disease research, but their limitations and complexities cannot be ignored. In the third webinar, experts Yulia Dyachkova (Merck Healthcare), Jenny Devenport (Roche), Cornelia Dunger-Baldauf (Novartis) abd Guillaume Canaud will lead a deep dive into the evolving role of SATs in drug development. The discussion will cover regulatory and […]
February 10 @ 8:00 am - February 12 @ 5:00 pm

8th TREAT-NMD® International Conference – Lisbon, 2026

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 […]
February 10 @ 5:00 pm - 6:30 pm

RealiseD Webinar 4: Enhancing patient-centricity in Rare Disease Clinical Trials

The final webinar focuses on what truly matters: the patient. Rare disease trials often struggle to capture outcomes that reflect patient priorities but RealiseD is working to change that. Rudradev Sengupta, Senior Trial Design Lead at One2Treat, will present an approach that embeds patient voices into every stage of trial design and analysis. By using […]
February 28 @ 10:00 am - 4:00 pm

RQMO 2026 International Rare Disease Day

On February 28th, from 10 a.m. to 4 p.m., we invite you to participate in the RQMO 2026 International Rare Disease Day. The event will be held in hybrid mode, meaning that it will be possible to attend in person or virtually.
March 2026
March 25 @ 8:00 am - March 27 @ 5:00 pm

4th Annual Scientific Symposium on SPG4

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 […]
March 27 @ 8:00 am - 5:00 pm

RARE.Qc’s Scientific Day and Annual General Meeting

The event will take place in the Cruess Amphitheatre and the Elspeth McConnell Atrium at the Research Institute of the McGill University Health Centre (RI-MUHC) in Montréal, and will also be offered in a virtual format.
April 2026
April 16 @ 8:00 am - April 17 @ 5:00 pm

3rd Symposium on Autoinflammation and Immune Dysregulation: “Celebrating Autoinflammation: On the Shoulders of a Giant

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.
May 2026
May 24 @ 8:00 am - May 29 @ 5:00 pm

15th edition of the International Myotonic Dystrophy Consortium (IDMC-15)

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!
May 31 @ 8:00 am - June 2 @ 5:00 pm

2026 Children’s Healthcare Canada Annual Conference, “Tomorrow’s Promise, Today’s Plan: Transforming Children’s Healthcare in Canada”

📆Save the date: May 31-June 2
June 2026
June 2 @ 8:00 am - June 4 @ 5:00 pm

ECRD: Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases

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.
September 2026
September 29 @ 8:00 am - October 2 @ 5:00 pm

17th International Symposium on Sjögren’s Disease

This prestigious event, which brings together researchers, physicians, patients and experts from around the world to discuss the latest advancements in Sjögren's disease.
October 2026
October 18 @ 8:00 am - October 20 @ 5:00 pm

Kids Brain Health Network (KBHN) Annual Conference

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!