Back-to-School with PH: Q&A Session
2025-09-04 11:00 - 12:00 (America/Edmonton)
Getting ready for a new school year can be exciting—but also challenging when pulmonary hypertension (PH) is part of the picture.
Join in on Thursday, Sept 4 at 11:00 AM EST for a virtual round table with Janette Reyes, PH Pediatric Nurse at SickKids Hospital.

IMPaCT Webinar: Lessons Learned from the Innovative Pediatric Clinical Trials (iPCT) Network
2025-09-10 10:00 - 11:00 (America/Edmonton)
Speakers: Tannis Erickson & Naveen Poonai Title: Lessons Learned from the Innovative Pediatric Clinical Trials (iPCT) Network

RareKids-CAN-Education Session: Family Engagement in Research Fundamentals
2025-09-17 14:00 - 15:00 (America/Toronto)
Join RareKids-CAN on September 17, 2025, from 2-3pm ET for their next education session, led by their Patient and Family Engagement Facilitators. This session is open to everyone interested in strengthening engagement practices. Don’t miss out!

EURORDIS Webinar: Patient Partnership 2025 – The Lupus100 Project
2025-09-18 18:00 - 19:00 (America/Edmonton)
The Lupus100 Project, recognized as a winner of the 2025 Patient Partnership Good Practice Challenge, highlights the crucial role of patient partnership in improving communication about rare diseases such as lupus.

LHON Awareness Day 2025 Webinar: "Exploring the Power of Nutrition in Mitochondrial Diseases"
2025-09-19 15:00 - 17:00 (America/Edmonton)
This year’s theme focuses on how nutrition can support mitochondrial health. You’ll hear from experts across Australia, Italy, and Brazil, sharing practical strategies and the latest research relevant to LHON and other types of mito.

Advancing Rare Disease Healthcare: Spotlighting the Economic and Health System Burden of Disease
2025-09-23 09:30 - 11:30 (America/Edmonton)
Please join this 1.5-hour live virtual meeting to hear esteemed faculty describe the global economic impact of rare diseases on patients and healthcare systems. Expert community advocates will also share their practical experience of advancing patients’ needs with key stakeholders. Panel discussion and audience questions will consider how to have meaningful impact in your country or region with patient healthcare experience data and insights to drive change in practice and better health outcomes for people living with rare disease. The live virtual meeting is further supplemented with published studies and content.

La dysferlinopathie: Une dystrophie musculaire affectant le muscle strié
2025-09-24 10:00 - 12:00 (America/Edmonton)
1st episode of the RQMO – RARE webinar series. QC presented by Camille Bouchard, PhD student in molecular medicine in the laboratory of Professor Jacques P. Tremblay, Université Laval
Moderator: Jonathan Pratt, Executive Director of the RQMO

Canadian Rare Disease Symposium: Preparing for Clinical Trials – International Regulatory Insights, and cGMP Gene Therapy Manufacturing capabilities in Canada
2025-10-01 13:00 - 16:00 (America/Toronto)
The Stem Cell Network (SCN) and the National Research Council Canada (NRC) are excited to contribute to the national conversation on cell and gene therapy for rare diseases. Building on the 2024 event titled “Canadian Rare Disease Ecosystem Symposium: Genetic Therapies for Rare Disease”, SCN and NRC are pleased to invite you to the Canadian Rare Disease Symposium: Preparing for Clinical Trials – International Regulatory Insights, and cGMP Gene Therapy Manufacturing Capabilities in Canada–a focused half-day event dedicated to advancing gene and cell therapy development in Canada through regulatory alignment and manufacturing readiness.
This virtual symposium will convene international regulatory authorities, Canadian manufacturing experts, and rare disease developers to explore two critical enablers of translational success: clinical trial readiness and cGMP manufacturing capacity.

Rare Diseases International-Community Conversations on Mental Health
2025-10-10 07:00 - 08:00 (America/Edmonton)

A Conversation About Patient Partner Outsider Syndrome
2025-10-15 10:00 - 11:30 (America/Edmonton)
Patient/caregiver partnership in health research has evolved substantially since the launch of Canada’s Strategy for Patient-Oriented Research (SPOR) over a decade ago. However, findings from the Patient Advisors Network (PAN) “Reimagining the Research Landscape” report, commissioned by CIHR in 2024 for the SPOR Refresh, revealed that patient/caregiver partners often feel like outsiders in the research ecosystem. This webinar will take a deeper dive into the OSSU Research Day presentation “Why do patient/caregiver partners feel like outsiders?”
Ms. Maureen Smith will moderate a frank discussion between two of the report authors, Mses. Alies Maybee and Annette McKinnon, and PAN Board member Ms. Sandra Holdsworth, and leading patient-oriented researchers Drs. Manoj Lalu, Ambreen Sayani and Stuart Nicholls, on the barriers uncovered by the report and showcasing best practices to mitigate these barriers.

Aging Out: Transition of care for children with rare neurodevelopmental disorders
2025-10-16 12:30 - 13:30 (America/Toronto)
Approximately one in 12 Canadians are affected by a rare disorder and two thirds of them are children, according to the Canadian Organization for Rare Disorders (CORD). Due to the low number of individual cases, qualified specialists are hard to find. After years of assembling a trusted pediatric care team, parents are often faced with the challenge of finding a new adult care team once their child turns 18. The challenge is even more complex for rare neurodevelopmental disorders requiring multi-disciplinary care.
What strategies would ease the pediatric to adult care transition? This webcast will bring health care providers, medical experts and patient advocates together to share ideas and solutions to bridge the gap between pediatric to adult care for those living with neurodevelopmental disorders.

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).
