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.

Undiagnosed Hackathon 2025
2025-09-21 08:00 - 2025-09-24 17:00 (America/Chicago)
350 million people live with an undiagnosed disease worldwide. Genome sequencing can provide answers for 40% of the People Living With Undiagnosed Disease (PLWUD) but around 60% still don’t receive a diagnosis. The purpose of the Undiagnosed Hackathon is trying to find new ways and collaborations to solve the undiagnosed diseases, that can’t be solved today. In this unique event multidisciplinary teams of clinicians, bioinformaticians/molecular biologists, scientists, developers, AI specialists and brilliant minds will work together to tackle the most difficult diseases.

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.

6th Western Canadian Neuromuscular Conference
2025-09-25 08:00 - 2025-09-27 17:00 (America/Edmonton)
The 6th Western Canadian Neuromuscular
Conference is confirmed for 2026! Don’t miss
the opportunity to network with leading experts
and stay at the forefront of medical
advancements in the field of neuromuscular
diseases.

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.

30th Annual International Congress of the World Muscle Society
2025-10-07 08:00 - 2025-10-11 17:00 (Europe/Vienna)
The World Muscle Society is a dynamic community that aims to promote, disseminate, and share all aspects of neuromuscular physiology and diseases, from basic science to patient care. It encompasses a broad range of scientists and healthcare professionals who share the common interest for neuromuscular disorders.

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.

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.

RQMO 2025 Education Day
2025-10-18 08:00 - 17:00 (America/Toronto)
Under the theme “Rare Diseases: Let’s Break Isolation Together!”, this event aims to build bridges between those who live the daily reality of rare diseases and those who accompany and care for them.

Building Bridges: Advancing Collaborative Pediatric Palliative Care
2025-10-22 08:00 - 17:00 (America/Toronto)
This pediatric palliative care symposium is for health care professionals interested in increasing their knowledge and skill in working with children with serious illness and their families.
The goal is to share research and clinical experiences that broaden the perspectives and collaborative efforts to enhance the care delivery in hospital, home and hospice.
Pediatric-focused clinician’s and adult palliative care clinicians most welcome

Cardiac Precision Medicine in the 21st Century
2025-10-29 08:00 - 2025-10-31 17:00 (America/Toronto)
The 10th International Cardiovascular Genomic Medicine & SickKids Cardiac Precision Medicine Conference is making its debut in North America! This year’s theme, “Cardiac Precision Medicine in the 21st Century,” delves into cardiovascular genomics and precision medicine in the era of ‘Omics’, AI and digital medicine. Join us as we bring together international experts and innovators to explore transformative research and collaborative opportunities that can shape the future of cardiovascular medicine.
This event will feature the 4th William Harvey Oration delivered by Dr. Sharlene Day and the Dr. Michael Braudo Lectureship delivered by Dr. Ma’n H. Zawati.

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.

YPAHD Day + National Conference
2025-10-30 08:00 - 2025-11-01 17:00 (America/Toronto)

Ehlers-Danlos Society ECHO Summit: Mental Health
2025-11-01 08:00 - 18:00 (America/Edmonton)
The Ehlers-Danlos Society is delighted to welcome you to register for the EDS ECHO Summit: Mental Health, a virtual event held on November 1, 2025. This event is suitable for community members, their friends, families, and caregivers, as well as healthcare professionals.
This event will feature presentations, case studies, and panel discussions around the latest management and care strategies, featuring presentations on the following topics:

The Mind/Body Connection
Coping with a Diagnosis
Intersectionality
Neurodivergence
Practical Management Strategies

Canadian Caregiving Summit 2025
2025-11-03 08:00 - 2025-11-04 17:00 (America/New_York)
A brighter future of care is possible. Following the release of A National Caregiving Strategy for Canada, the Canadian Caregiving Summit, hosted by the Azrieli Foundation’s Canadian Centre for Caregiving Excellence, will mobilize caregivers, care providers, systems leaders, policy makers and researchers across the aging, disability and healthcare communities to work together to make caregiving a national priority.

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.

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.

IPIC 2025
2025-11-05 08:00 - 2025-11-07 17:00 (Europe/Helsinki)
IPIC is one of the leading international congresses on primary immunodeficiency (PID) diagnosis and clinical care with a unique approach to its scientific programme underpinned by its focus on patient-centredness. With a truly international impact, the congress has earned its definite place and role in the PID clinical landscape.

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!

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!

Duchenne Patient Academy 2025
2025-12-13 08:00 - 2025-12-14 17:00 (America/Edmonton)

SMA Together: Learn. Share. Connect. A Mini-Regional Conference - Toronto
2025-12-13 11:00 - 14:00 (America/Toronto)
The SMA Together: Learn. Share. Connect. Mini-regional conference in Toronto is less than three weeks away! Join them, in-person on December 13 to learn about the latest updates in spinal muscular atrophy, including:

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.

ULF Webinar: The Guardianship Transition: Minor Child to Legal Adult
2026-01-18 14:00 - 15:00 (America/Toronto)
Catherine (Catie) Becker is a Pediatric Nurse Practitioner at Massachusetts General Hospital (MGH). Catie received her master’s degree in Pediatric Acute/Chronic Advanced Practice Nursing from the University of Pennsylvania. She has worked in the MGH Leukodystrophy clinic since 2011, working with a multidisciplinary team caring for both pediatric and adult patients with leukodystrophy.

ERN-EuroBloodNet-Session 1: Strong at Any Age – Redefining Frailty Together
2026-01-22 17:30 - 18:30 (Europe/Belgrade)
EuroBloodNet Topic on Focus: Ageing with a Bleeding Disorder”!
This educational program is coordinated by ERN-EuroBloodNet together with the umbrella patient organisation EHC – European Haemophilia Consortium, represented by ePAG advocate Marius Tanase.
