Canadian Rare Disease Network

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.

International Neurology Conference 2025 | Mental Health Conference, Thailand
2025-10-18 08:00 - 2025-10-19 17:00 (Asia/Krasnoyarsk)
Neurology & Mental Health conference 2025 is set to be held on the 18th and 19th of October 2025, in Bangkok, Thailand in hybrid mode, allowing everyone to gain knowledge and providing a platform for discussing the latest advancements in treatments and techniques, future and present challenges, and sharing invaluable experiences in Neurology and allied disciplines. The event will feature plenary lectures, speeches, research & technical presentations, and hands-on experience workshops to help shape the future of neurology & psychiatry.

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

The World Orphan Drug Congress
2025-10-27 08:00 - 2025-10-29 17:00 (Europe/Amsterdam)
The World Orphan Drug Congress is the largest and most established orphan drug & rare disease meeting of its kind across the globe.
From cell and gene therapy, genetic testing, and market access, to real world evidence, this one meeting covers the whole orphan drugs value chain where science, government and manufacturers all come together to create groundbreaking progress.

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.

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

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.

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).

Pan-Canadian OMOP Common Data Model Engagement Event
2025-11-17 08:00 - 2025-11-18 17:00 (America/Toronto)
This pan-Canadian event brings together teams using the OMOP common data model to advance research collaboration across Canada and beyond.

ITINERARE Symposium 2025
2025-11-18 08:00 - 17:00 (Europe/Zurich)
The programme features experts from a variety of fields, ranging from basic and translational research to clinical application and the ethical, social and legal aspects of rare disease research.

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

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!

CARELeuko Symposium 2025
2025-12-05 08:00 - 17:00 (America/Toronto)
The Canadian Association for Research Excellence in Leukodystrophy (CARELeuko) is excited to welcome you to the 2025 CARELeuko Symposium: Uniting Canada’s Leukodystrophy Community to Drive Collaboration and Accelerate Research and Care!
The 2025 CARELeuko Symposium is taking place on Friday, December 5, 2025, at the Research Institute of the McGill University Health Centre in Montreal, Quebec, Canada.

36th International Symposium on ALS/MND
2025-12-05 08:00 - 2025-12-07 17:00 (America/Los_Angeles)
The International Symposium is the biggest annual conference dedicated to ALS and MND research. Each year they bring together researchers from around the world to share new understanding of amyotrophic lateral sclerosis and motor neurone disease.

FA Together: Learn. Share. Connect. mini-regional conference in Calgary
2025-12-08 17:00 - 19:00 (America/Edmonton)

2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases
2025-12-09 08:00 - 2025-12-10 17:00 (America/Edmonton)
This second edition will convene a wide range of international experts, including researchers, clinicians, patient advocates, industry representatives, policymakers, and funders to strengthen the collaborative ecosystem that underpins clinical research in rare diseases worldwide.

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:

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.

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.

Knowledge Sharing Sessions – Feasibility of a Home-Based Exergaming Intervention for Youth With Spinal Muscular Atrophy.
2026-01-19 19:00 - 20:00 (America/Toronto)
Dr. Geoff Frost will be leading NMD4C’s first Physiatrist Community of Practice (CoP) Knowledge Sharing Session. He will present a recent article authored by Iraqi et al. on a work conducted in Canada by fellow NMD4C members: “Feasibility of a Home-Based Exergaming Intervention for Youth With Spinal Muscular Atrophy.”
The session will take place on January 19th, 2026 at 7:00 PM EST. To register, please contact CoP manager Maria Masnata. Once registered, Maria will send a calendar invite so you can easily save the date. We are looking forward to seeing you there!

RealiseD Webinar 2: Evidence Assessment Framework. A need to change mindset from developers, regulators and HTA
2026-01-20 17:00 - 18:30 (America/Edmonton)
The second webinar turns the spotlight on one of the most critical issues in rare disease research: the generation and assessment of evidence. François Meyer, a leading consultant in health technology assessment, will examine why current frameworks often fail to deliver predictable and aligned outcomes, resulting in delays and inequalities in patient access. The session will explore the global and European initiatives aimed at addressing these shortcomings and present the RealiseD consortium’s efforts to advance scientific and operational solutions. More importantly, it will advocate for a fundamental shift in mindset—one that embraces flexibility and innovation in the way evidence is generated, interpreted, and assessed.

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.

Healthy Living and Aortopathy
2026-01-22 19:00 - 20:00 (America/Toronto)
Save the date for your upcoming webinar with Dr. Nathaniel Moulson, focused on exercise. This webinar will take place on January 22, 2026 at 7:00pm, registration details to be released in the coming weeks.

PiPER Community of Practice for 2026
2026-01-28 12:00 - 13:00 (America/Toronto)
Save the date on *January 28th 2026* from 12-1 pm for a dynamic session titled “Lessons Learned by a Research Team New to Engaging PLEX in Randomized Controlled Trials ”.

Canada's Drug Agency-Preconsultation Webinar: Improvements to the Drug Reimbursement Review Process
2026-01-28 14:00 - 15:30 (America/Toronto)
Join CDA’s preconsultation webinar on proposed improvements and upcoming procedural changes to our drug reimbursement review process.
You will hear from their senior leaders how these plans will advance our efforts to modernize and streamline drug reimbursement reviews.
