Canadian Rare Disease Network

CPD-Accredited Webinar | Duchenne Muscular Dystrophy in the New Steroid Age: Practical Considerations
2026-04-07 15:00 - 17:00 (America/Edmonton)
NMD4C, MDC, and Defeat Duchenne Canada are pleased to invite you to a CPD-accredited webinar on Duchenne Muscular Dystrophy in the Evolving Steroid Era: Practical Neuromuscular and Endocrine Considerations. This CPD-accredited webinar is primarily targeted at Canadian clinicians, academics and trainees with an interest in neuromuscular diseases.

ALS Clinical Trials Unboxed
2026-04-10 13:00 - 14:00 (America/Toronto)
On Friday, April 10, at 1:00 p.m. ET, tune into ALS Clinical Trials Unboxed to learn about ongoing ALS clinical trials in Canada and globally for people living with ALS. In this webinar, Dr. Tyrell J. Simkins, DO, PhD, Senior Director of Clinical Development at Coya Therapeutics, will discuss the scientific rationale behind COYA 302 and the design of the ALSTARS trial.

Building Business Cases for Genomics
2026-04-22 12:00 - 13:00 (America/Toronto)
In this panel discussion and interactive Q & A with Dr. Colleen Campbell, Andrea Spencer, MBA, CHE, CMP (Prosci), Megan Trinkle-Knotts, and host DNA Today‘s Kira Dineen, MS, LCGC, CG(ASCP)CM, genetic counselling directors, hospital consultants, and business case experts will address how to build compelling, evidence-backed business cases.

Innovative Financing for Rare Diseases
2026-04-23 05:00 - 06:00 (America/Edmonton)
How can innovative financing approaches improve equitable access to diagnosis, treatment, and care for people living with rare diseases?
Join RDI-International for a new webinar series bringing together health economists, policymakers, patient advocates, and payers. Through a multistakeholder dialogue, this series will examine key financing gaps and barriers to access, map these challenges to relevant innovative financing mechanisms, discuss enabling conditions for implementation, and inform policy and advocacy actions.

ALS Disrupt
2026-04-25 08:00 - 2026-04-26 17:00 (America/Toronto)
A bold new meeting designed to bring together global leaders in #ALS for open, timely, and collaborative discussions that move the field forward.

From Blueprint to Action: How We Can Advance Palliative Care in Canada Together
2026-05-07 10:00 - 11:00 (America/Edmonton)
Access to hospice palliative care in Canada still varies widely, with barriers linked to geography, diagnosis, and social factors. The Blueprint for Action 2025–2030 outlines priorities to improve equitable, culturally safe care. This webinar introduces the roadmap and offers practical guidance on advocacy and government engagement to help individuals and organizations drive meaningful change.

RareKids-CAN-Bill C-265 Webinar: Improving Access to Essential Medications in Canada
2026-05-14 11:00 - 12:00 (America/Edmonton)
Join RareKids-CAN for a timely conversation with MP Marcus Powlowski (MP for Thunder Bay – Rainy River) alongside healthcare professionals and patient advocates from across Canada, on improving access to essential medications not currently available in the country.

Newly Diagnosed with a Genetic Aortic Disorder: What You Need to Know
2026-05-14 16:30 - 17:30 (America/Edmonton)
Led by patient advocates, Lindsey Rusche and Liz Martin, this educational webinar is designed specifically for individuals and families who have been newly diagnosed with a genetic aortic disorder. The goal of this session is to provide clear, reassuring, and evidence-based information to help patients better understand their diagnosis and feel supported as they begin their care journey.

ALS Canada: ALS Clinical Trials Unboxed
2026-05-15 10:00 - 11:00 (America/Edmonton)
On Friday, May 15, 2026 at 12 p.m. ET, join ALS Canada for our next ALS Clinical Trials Unboxed webinar to learn more about ongoing ALS clinical trials.

RQMO: Le grand pouvoir des petites populations
2026-05-19 10:00 - 11:00 (America/Edmonton)
6e épisode de la série de webinaires RARE.QC-RQMO présenté par Simon Girard, Ph.D, Professeur en génétique humaine, Université du Québec à Chicoutimi et un de ses étudiants au doctorat en biologie, M. Gilles-Philippe Morin.
Le titre de la présentation de M. Morin est : Déceler la structure fine de population du Saguenay–Lac-Saint-Jean par la génétique et la généalogie.
Modération : Jonathan Pratt, Directeur général du RQMO

Rare Diseases International: A Catalyst for Global Health Transformation
2026-05-20 10:00 - 11:30 (America/Edmonton)
Bringing together policymakers, patient advocates, industry leaders, researchers, and global health institutions, the event will explore how rare diseases can drive people-centered, equitable health systems.

Sickle Cell Awareness Group of Ontario: Learning for Life Webinar
2026-05-30 09:00 - 22:30 (America/Edmonton)
Join SCAGO for an informative virtual session on Novel Therapies in Sickle Cell Disease Pain Management: What Patients and Families Should Know.
