People's Perspectives: Living with Loeys-Dietz Syndrome
2026-03-19 19:00 - 20:00 (America/Toronto)
For the first time, the Loeys-Dietz Syndrome Foundation Canada and the Loeys-Dietz Syndrome Foundation – a division of the Marfan Foundation – are joining forces to bring you real talk about LDS from those with lived experience. Join four community members – two from the United States and two from Canada – for this dynamic moderated discussion.

PiPER Community of Practice: Patient Partners in Learning Health Systems: The Centre for Digital Health Evaluation Experience
2026-03-25 10:00 - 11:00 (America/Edmonton)
Save the date on *March 25th 2026* for a dynamic session entitled “Patient Partners in Learning Health Systems: The Centre for Digital Health Evaluation Experience”.

Gene Therapy for IEI: It's Taken Us So Long 'Cause We've Got So Far To Come
2026-03-25 10:00 - 12:00 (America/Edmonton)
Moderated by Dr. Jordan Orange, this important conversation will explore the progress, promise, and future of gene therapy for Inborn Errors of Immunity.

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.

CHILD-BRIGHT Network EDI-DI Youth Empowerment Program Knowledge Mobilization Showcase
2026-04-16 17:00 - 18:00 (America/Toronto)
Over the past few weeks, youth from across Canada have come together to explore equity, diversity, inclusion, decolonization, and Indigenization in brain-based developmental disability research. Now, they are ready to share what they have created!

Ontario Rare Action Group Information Meeting
2026-04-21 19:00 - 20:00 (America/Toronto)
Join the Ontario Rare Action Group information meeting April 21, 2026. They will be talking to you about what they’ve been up to the last month and how the community is continuing to grow.

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.
