Canadian Rare Disease Network

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:

8th TREAT-NMD® International Conference – Lisbon, 2026
2026-02-10 08:00 - 2026-02-12 17:00 (Europe/Lisbon)
Join TREAT-NMD at this vital, in-person gathering where patients, clinicians, researchers, industry, and regulators come together to tackle the biggest challenges in neuromuscular treatment development, diagnosis and care. Topics will include; disrupted clinical trial delivery, regulatory uncertainty, global access inequalities and shrinking public funding, they’ll tackle these themes with a holistic, solutions-driven approach and a patient centric and global focus.

RQMO 2026 International Rare Disease Day
2026-02-28 10:00 - 16:00 (America/Toronto)
On February 28th, from 10 a.m. to 4 p.m., we invite you to participate in the RQMO 2026 International Rare Disease Day. The event will be held in hybrid mode, meaning that it will be possible to attend in person or virtually.

2026 Children’s Healthcare Canada Annual Conference, “Tomorrow’s Promise, Today’s Plan: Transforming Children’s Healthcare in Canada”
2026-05-31 08:00 - 2026-06-02 17:00 (America/Edmonton)
📆Save the date: May 31-June 2

ECRD: Rare Diseases in a Changing & Competitive Europe: Shaping policies to address the unmet needs of people living with rare diseases
2026-06-02 08:00 - 2026-06-04 17:00 (Europe/Prague)
The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe.
By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives, EURORDIS harnesses the power of this extensive network to shape goal-driven rare disease policies of the future.

17th International Symposium on Sjögren's Disease
2026-09-29 08:00 - 2026-10-02 17:00 (Europe/Paris)
This prestigious event, which brings together researchers, physicians, patients and experts from around the world to discuss the latest advancements in Sjögren’s disease.

Kids Brain Health Network (KBHN) Annual Conference
2026-10-18 08:00 - 2026-10-20 17:00 (America/Edmonton)
Save the Date!
Kids Brain Health Network (KBHN) is thrilled to announce the return of their Annual Conference, happening October 18–20, 2026, in Calgary, Alberta!
