RareKids-CAN Coffee Chat: Digital Storytelling with Krystle Schofield
2025-10-16 20:00 - 21:00 (America/Toronto)
Join other parents, caregivers, and individuals impacted by rare diagnosis and rare disease on October 16 at 8 P.M. EST. and learn about digital storytelling. Learn from Krystle Schofield, a RareKids-CAN parent partner, B.C. mom, digital storytelling facilitator + photographer.

KTDRR’s 2025 Virtual Knowledge Translation Conference
2025-10-20 13:00 - 2025-10-23 16:00 (America/Toronto)
This conference will look at different ways to make knowledge translation (KT) more effective and impactful. They seek presentations that will discuss how to measure the success of KT efforts, including involving users early on, working with people with disabilities, and customizing products and outreach to meet user needs. They’ll also look for presentations that talk about sharing KT content online, ensuring it’s credible, teaching digital literacy, spotting false information, and making sure disability is represented accurately. In addition, they encourage presentations that explore how technology can boost KT projects, such as using digital tools to build online communities, check text readability, and summarize research. They also welcome presentations that highlight the role of artificial intelligence (AI) in creating easy-to-understand summaries, organizing research, addressing AI bias, and writing effective prompts. Join them to discover new strategies and tools to enhance your KT efforts.

Easing Pain, Advancing Care: A New Pathway for Children with Severe Neurological Impairments
2025-10-29 09:00 - 10:00 (America/Edmonton)
This webinar will provide an overview of the multi-phased project, from clinical trial to implementation. It will highlight the clinical complexity of assessing pain and irritability; the project’s relevance and impact for clinicians, children with health complexity, and their families; as well as key lessons for patient-oriented research and implementation science.

Taking multiple medications? 5 questions to ask
2025-10-29 10:00 - 12:00 (America/Edmonton)
In recognition of Canadian Patient Safety Week 2025 (October 27-31), join Dr. Emily McDonald — a physician specializing in patient safety and Director of the Canadian Medication Appropriateness and Deprescribing Network — for a live, interactive webinar.
Learn essential questions to ask to ensure all your medications are still necessary and helping you.

They are sacred: First Nations' Journey in Autistic Care and Advocacy
2025-10-30 11:00 - 12:00 (America/Edmonton)
UPCOMING RESEARCH FORUM | Grant Bruno, Mariam Ahmad and Tierney Littlechild offer insights on how First Nations families, Elders, autistic individuals, and community leaders are reshaping autism support through Indigenous knowledge, ceremony, and relational approaches.

Screen4Rare: Making AI Diagnosis Understandable
2025-11-04 05:30 - 07:30 (America/Edmonton)
A co-creation workshop inviting non-AI experts to help design communication tools such as videos and brochures that make AI-supported diagnosis more understandable, trustworthy and human.

Canadian Collaborative Conference on Myalgic Encephalomyelitis (ME)
2025-11-04 13:00 - 2025-11-06 17:00 (America/Toronto)
This will include presentations and panel discussions focused on current scientific findings, the opportunities to strengthen research design, and the need to create more inclusive and accessible research spaces.

Webinar: Health Financing & Social Health Protection for Rare Diseases
2025-11-05 06:00 - 08:00 (America/Edmonton)
Rare Diseases International (RDI) and the P4H Network have partnered to enable global advocacy and collaboration to influence and support innovation in health financing arrangement and social health protection that concretely promote effective health coverage, increased access and adequate financial protection for people living with rare diseases.

The McMaster Immune Thrombocytopenia (ITP) Summit 2025
2025-11-07 08:00 - 17:00 (America/Toronto)
By attending this activity, participants will be able to:

Compare the clinical and laboratory features of Immune Thrombocytopenia (ITP) and Warm Autoimmune Hemolytic Anemia (WAIHA).
Evaluate current and emerging therapeutic strategies for ITP in the context of shared immune mechanisms with WAIHA.
Interpret patient experiences to inform a more empathetic and holistic approach to managing autoimmune cytopenias.
Discuss the role of antibody, complement, and cellular immune mechanisms in the pathogenesis of ITP and WAIHA.

ISCT North America Regional Virtual Town Hall
2025-11-10 12:00 - 14:00 (America/Toronto)
Join ISCT on November 10 for an engaging Town Hall discussion on the real-world implementation of gene therapy for sickle cell disease (SCD). The session will be led by Dr. Hemalatha Rangarajan, leader of the gene therapy program for non-malignant disorders, who has also launched multiple clinical trials in transplant for SCD at Nationwide Children’s Hospital (NCH).

Le poisson-zèbre pour accélérer la recherche sur les maladies rares.
2025-11-13 10:00 - 11:30 (America/Edmonton)
Episode 2 of the RQMO – RARE webinar series. QC presented by Éric Samarut, Assistant Professor and regular researcher at the CHUM Research Centre, Université de Montréal
Moderator: Jonathan Pratt, Executive Director of the RQMO

IP Strategies for Repurposing
2025-11-21 06:00 - 07:30 (America/Edmonton)
Discover the value of having an intellectual property (IP) strategy in your repurposing project and how to use this to drive succes.

Bridging Gaps: A Patient-Oriented Neuroscience Research Symposium
2025-11-22 11:00 - 16:00 (America/Toronto)
Bringing together neuroscience researchers, patients, advocates and caregivers to highlight brain health research in an accessible format.

Hope on the Horizon: Trials, Treatments and Therapies for DMD, DM1 & MG
2025-11-26 18:00 - 2025-11-28 19:00 (America/Toronto)
Muscular Dystrophy Canada in partnership with the Neuromuscular Disease Network for Canada (NMD4C)’s Clinical Trial Network is excited to host three Hope on the Horizon events!
These webinars are geared towards family members and people living with NMDs.
Join us from November 26th – 29th to learn more about the treatment and clinical trial landscape for Duchenne Muscular Dystrophy, Myotonic Dystrophy Type 1 and Myasthenia Gravis from key experts in the field!

Child Health and Wellness Seminar: The Evolution of Medical AI: Progress, Potential, and Responsibility
2025-12-01 08:30 - 09:30 (America/Edmonton)
The Evolution of Medical AI: Progress, Potential, and Responsibility Speaker: Dr. Eman Rezk, PhD NSERC Postdoctoral Fellow Department of Electrical and Computer Engineering, University of Waterloo Host: Dr. Mohamed Eltorki, MD, FRCPC Associate Professor, University of Calgary

Introduction to the Disability Tax Credit
2025-12-02 12:30 - 13:30 (America/Toronto)
A presentation about the gateway tax credit and the benefits it unlocks:

Learn how the credit works and who qualifies
Learn how the credit unlocks other federal benefits
Discover practical tips for your application

Can-Child Webinar: F-words Foundations Workshop
2025-12-04 09:30 - 12:30 (America/Toronto)
Interactive 3-hour F-words Foundations Workshop to explore how to bring the F-words for Child Development—Functioning, Family, Fitness, Fun, Friends, and Future—into everyday practice and life!

STAGE International Speaker Seminar Series (ISSS)-Laura Arbour
2025-12-05 12:30 - 13:30 (America/Edmonton)
Reducing Genetic and Genomic Health Disparities for Indigenous People of Canada: Insights from the Silent Genomes Project

Webinar: 'The importance of genetic counselling in the diagnostic of rare neurological disorders' by Maria Judit Molnar
2025-12-09 07:00 - 09:00 (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).

Modeling the disease to better fight it: a new approach to heart enlargement associated with RASopathies
2025-12-10 10:00 - 12:00 (America/Edmonton)
Full title: Modeling the disease to better fight it: a new approach to heart enlargement associated with RASopathies
Episode 3 of the RQMO – RARE webinar series. QC presented by Anais Medouni, PhD student in Anatomy and Cell Biology in the laboratory of Dr. Gregor Andelfinger, CHU Sainte Justine Research Center, Université de Montréal
Moderator: Jonathan Pratt, Executive Director of the RQMO

Every Relapse Matters: The Evolving NMOSD & MOGAD Treatment Landscape in Canada
2025-12-11 17:30 - 18:30 (America/Edmonton)
The Sumaira Foundation Canada is pleased to invite you to an important educational webinar on Thursday, December 11th at 7:30 PM EST. This session will explore the evolving treatment options for individuals living with AQP4+ NMOSD, seronegative NMOSD, and MOGAD in Canada.

Canadian Fragile X Research Rounds: Protein Replacement Therapy for Fragile X Syndrome
2025-12-12 12:00 - 14:00 (America/Edmonton)

ERDERA: Joint Transnational Call 2026
2025-12-16 15:00 - 17:00 (America/Edmonton)
This information webinar on the 2026 Joint Transnational Call for Proposals is scheduled for 16 December 2025, 15:00–17:00 CET, focusing on resolving unsolved rare genetic and non‑genetic diseases.

Webinar: Lymphodepletion for CAR-T/IEC Outcomes
2025-12-17 12:00 - 14:00 (America/Toronto)
Achieving consistent and effective outcomes in CAR T and other immune effector cell (IEC) therapies relies heavily on getting lymphodepletion “right.” Emerging evidence shows that both under- and over-exposure can impact safety, efficacy, and long-term persistence, making optimized dosing strategies increasingly critical as the field evolves.
This webinar will explore how model-informed and data-driven approaches can help identify the optimal lymphodepletion exposure window, improve predictability, and support more standardized practices across patient populations and treatment centers. Speakers will discuss current challenges, scientific rationale, clinical insights, and practical considerations for implementation.

CMT episode 1: Challenges in the diagnosis and treatment of inherited neuropathies
2026-01-08 08:00 - 09:00 (America/Edmonton)
Delivered by Dr. Davide Pareyson (Fondazione IRCCS Istituto Neurologico C.Besta (FINCB), Milan, Italy) & Dr. Filippo Genovese (The European Charcot-Marie-Tooth Federation & ACMT-Rete per la malattia di Charcot-Marie-Tooth OdV), Thu 08 Jan 2026 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology.

RealiseD Webinar 1: Realising Clinical trials in Ultra-Rare diseases
2026-01-13 17:00 - 18:30 (America/Edmonton)
Join RealiseD’s first webinar to learn how RealiseD is pioneering a collaborative and comprehensive approach to clinical trials in ultra-rare diseases. During the webinar, they’ll walk you through the project’s objectives, structure, and methodologies—and show how you can be part of this transformative journey.

CanPKU+: Advocacy in Action Update Sessions
2026-01-14 19:00 - 20:00 (America/Edmonton)
Join the Advocacy in Action Update Sessions with John Adams in order to hear updates on various campaigns and what needs to be done to move things forward for the PKU community.

Rare Disease Internation-Moving the WHA Resolution on Rare Diseases Forward: From Promise to Action
2026-01-15 05:30 - 06:30 (America/Edmonton)
Join RDI for this public webinar where they will discuss the current status of the WHA Resolution implementation, as they approach the World Health Organization Executive Board meeting taking place in February 2026. This webinar will engage in a multistakeholder dialogue focusing on the necessary path forward to accelerate the implementation of the Resolution and importantly the development of the GAPRD.

CMT episode 2: Progress in genetic diagnosis for neuropathies
2026-01-15 08:00 - 09:00 (America/Edmonton)
Delivered by Dr. Andrea Cortese (University College London, Department of Neuromuscular Diseases, UK), Thu 15 Jan 2026 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology.

When Nutrient Sensing Goes Wrong: How Metabolic Signals Can Drive Epilepsy and Autism
2026-01-15 10:00 - 11:00 (America/Edmonton)
4e épisode de la série de webinaires en collaboration avec Rare.qc et le RQMO.
Titre complet : When Nutrient Sensing Goes Wrong: How Metabolic Signals Can Drive Epilepsy and Autism
Paul A. Dutchak, Ph.D is an Associate Professor at Université Laval and Principal Investigator at the CERVO Brain Research Centre (Québec, Canada). His laboratory studies how genetic mutations in the GATOR1 amino acid–sensing complex drive epilepsy and autism spectrum disorders through disruptions in cellular signaling, neurometabolism, and brain excitability. His group has developed a first-in-class antisense oligonucleotide therapeutic targeting this pathway, with strong preclinical efficacy in genetic epilepsies. His research program is currently supported by the Canadian Institute of Health Research.
Moderator : Jonathan Pratt, Executive director of the RQMO
