Canadian Rare Disease Network

'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).

Regroupement québécois des maladies orphelines: NRGI - open science to understand common and rare neurological disorders
2026-06-17 10:00 - 11:00 (America/Edmonton)

Cystic Fibrosis Canada's 2026 Webinar: Spotlight on CF Research 2026
2026-06-17 12:00 - 13:30 (America/Edmonton)
Register now for Cystic Fibrosis Canada’s 2026 Spotlight on CF Research Webinar, offered in English and French with live simultaneous interpretation.

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.

CORD Webinar: From Genomic Testing Readiness to Rare Disease System Readiness
2026-06-23 12:00 - 13:00 (America/Toronto)
Join Durhane Wong-Rieger (CORD) and Don Husereau (University of Ottawa) for a discussion on moving from genomic testing readiness to rare disease system readiness and shaping the next phase of Canada’s Rare Disease Strategy

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

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.

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.

DNA2RNA: Generative AI to Predict and Engineer Human Tissues and Cells
2026-07-14 10:30 - 11:30 (America/Toronto)
Join D2R for this hybrid seminar with Professor Mo Lotfollahi from the Wellcome Sanger Institute and the Cambridge School of AI in Medicine at the University of Cambridge about “Generative AI to Predict and Engineer Human Tissues and Cells”.

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.

Health Canada Webinar: Real-World Evidence in the National Strategy for Drugs for Rare Diseases
2026-07-22 12:00 - 13:00 (America/Toronto)
This session is designed to provide you with a clear understanding of the goals, an update on progress, and the next steps as planning advances. It will include a short presentation from Health Canada followed by a Question & Answer session.

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.

CORD Webinar: Building the Baseline: How Does Canada Measure Up in Terms of Rare Disease Readiness?
2026-07-28 10:00 - 11:00 (America/Edmonton)
Join CORD for an interactive 60-minute indicator lab exploring how Canada can measure progress in rare disease readiness. Together, experts and participants will examine and rate key policy and delivery indicators to identify what matters most, where data gaps exist, and what a national readiness baseline could look like. This session focuses on building a Canada-wide picture of rare disease readiness, not ranking provinces. Participants will help identify promising examples and shared opportunities for improvement as CORD develops a national readiness indicator inventory.

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.

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.

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.

Global Genes: RARE Drug Development Symposium
2026-09-09 08:00 - 2026-09-11 17:00 (America/Toronto)
Join Global Genes virtually from September 9 – 11, 2026 and access high-impact sessions directly from your home or office.
What’s included in the Live Stream:
2 Fireside Chats
6 General Sessions
Keynote Talks
Pitch Perfect Session
Connect with advocates, researchers, and leaders shaping the future of rare drug development.

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.

SickKids: Neurovascular Family Education Day 2026
2026-09-19 09:00 - 14:00 (America/Toronto)
Please join SickKids for an educational event for patients, families, and care-givers featuring expert speakers on Moyamoya Disease.
