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.

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)

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.

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

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

Spastic Paraplegia Foundation (SPF) TALKS w/ Dr Ziv Gan-Or/Neuro and Linda Lafontaine
2026-07-08 11:00 - 12:00 (America/Edmonton)

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.

IMPaCT Webinar: Responsible Research Practices: How Reporting Guidelines Can Improve Child Health Trials
2026-07-09 12:00 - 13:00 (America/Toronto)
Register today for IMPaCT’s next webinar with Ami Baba, PhD, where she’ll discuss Responsible Research Practices: How Reporting Guidelines Can Improve Child Health Trials.
✅ Identify who needs trial reporting guidelines
✅ Introduce pediatric-specific reporting guideline extensions for trials and systematic reviews
✅ Describe how SPIRIT-C, CONSORT-C, TIDieR-C, and PRISMA-C can impact both upstream and downstream research processes

CORD Webinar: The Cost of Waiting: Socioeconomic Impact of Rare Disease in Canada
2026-07-14 10:00 - 11:00 (America/Edmonton)
CORD is pleased to invite you to our upcoming webinar, The Cost of Waiting: Socioeconomic Impact of Rare Disease in Canada . Join patients, caregivers, clinicians, researchers, policy makers and health system leaders for a conversation on the real-world impacts of delayed diagnosis and fragmented care, and what Canada can do to reduce the burden on families while building a more responsive rare disease system.

Kabuki Syndrome Foundation Live Webinar: Together for Progress
2026-07-16 10:00 - 12:00 (America/Edmonton)
Join the Kabuki Syndrome Foundation at their upcoming live webinar, Together for Progress, on July 16, 2026. You can look forward to the latest updates on treatment development, learn about new resources for families and clinicians, and discover what’s next in their global efforts to improve the health of everyone with Kabuki syndrome.

RareKids-CAN: Delivering Gene Therapy Trials: Understanding Clinical Workflows, Operations, and the Patient Journey
2026-07-22 12:00 - 13:00 (America/Toronto)
Join RareKid-CAN on July 22nd for their second webinar in our ATMP series for research coordinators, nurses, pharmacists, investigators, and other clinical research professionals.
Their speaker Ana Stosic will provide a practical overview of the clinical workflows involved in delivering gene therapy clinical trials for pediatric rare diseases.

CORD: From Readiness to Action: The Capstone Consultation Before the Rare Readiness Scorecard Launch
2026-08-11 12:00 - 13:30 (America/Toronto)
Final Webinar in CORD’s 4-Part Summer Rare Disease Readiness Series

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.

ALS Canada: ALS Research and Clinical Trials 101 Q&A Drop-In
2026-08-19 13:00 - 14:00 (America/Toronto)
This monthly Q&A drop-in session is available for people living with ALS, their families, caregivers, and anyone close to someone living with the disease who is seeking information or might have questions about ALS research and/or clinical trials

ALS Canada: Storytelling and Legacy Building for the ALS Community
2026-08-20 13:00 - 14:00 (America/Toronto)
Join ALS Canada for an inspiring panel on how people affected by ALS are sharing their lived experiences and turning their stories into meaningful legacies. Learn simple ways to document your journey, build connection through storytelling, and preserve your story for the future.

Cavernous Malformation Canada Clinical & Scientific Symposium
2026-09-18 08:00 - 2026-09-19 16:00 (America/Toronto)
Hosted by the driven team at Cavernous Malformation Canada (CMC) and their Clinical and Scientific Advisory Board, the 2026 Cavernous Malformation Clinical and Scientific Symposium will be informative not only for the experienced but also those early in their understanding of this disease.

Cavernous Malformation Canada Patient & Family Conference
2026-09-18 08:00 - 2026-09-19 17:00 (America/Toronto)
Join Cavernous Malformation for an educational two-day patient and family conference featuring expert speakers, interactive opportunities between patients and clinicians, and meaningful moments of connection and sharing with others impacted by cavernous malformation.

Regroupement Quebecois des Maladies Orphelines (RQMO) Educational Day 2026
2026-09-19 10:00 - 16:00 (America/Toronto)
This year, the RQMO Educational Day will be held at the Travelodge Hotel in Quebec City (3125 Hochelaga Boulevard) and will have the theme “The impacts of rare diseases – towards better inclusion”.
This awareness day aims to be a space for exchange, reflection, and sharing about the realities experienced by people living with rare diseases. RQMO wants to highlight the daily challenges, but also concrete ways to build a more inclusive society.

Pulmonary Hypertension Association Canada’s PH Community Conference & Scientific Sessions
2026-09-24 08:00 - 2026-09-26 17:00 (America/Vancouver)
🔬 Thursday, September 24
CPHPN and CaPH-Net meetings (by invitation) and the Scientific Sessions Opening Reception. Primarily for healthcare professionals, researchers, and invited network members.
🩺 Friday, September 25
Scientific Sessions — a full day dedicated to the latest PH research, clinical advancements, and collaboration among healthcare professionals and researchers. The day concludes with the Patient & Family Symposium Welcome Reception, where the entire PH community comes together.
💜 Saturday, September 26
Patient & Family Symposium — designed specifically for PH patients, caregivers, family members, and supporters. A day of education, inspiration, connection, and community.

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!
