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.

MitoRevolution Research Symposium and Innovation Day
2026-04-09 08:00 - 17:00 (America/Toronto)
Researchers, clinicians, and trainees working in mitochondrial science are invited to attend the 6th Annual MitoRevolution Research Symposium and Innovation Day, hosted by their partners Mito2i, on Thursday, April 9, 2026, at the MaRS Auditorium in Toronto.

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!

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.

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.

CORD: Rare Disease Day 2026 Conference
2026-04-29 08:00 - 2026-04-30 17:00 (America/Toronto)
Join CORD for their Annual Rare Disease Day Conference in Toronto!

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

4th Heritable Aortic Disorders Symposium
2026-05-22 08:00 - 2026-05-23 17:00 (America/Vancouver)
Join the Heritable Aortic Disorders community in Vancouver on May 22–23, 2026 for an in-person event bringing together experts from across Canada and around the world to discuss the latest developments in the genetics, diagnosis, and management of hereditary thoracic aortic disorders.
Day 1 is designed for healthcare professionals, with updates on research, diagnostic protocols, and clinical management.
Day 2 is dedicated to patients and families, featuring presentations and small-group workshops led by local and international experts.
UBC Robson Square, Vancouver, BC

CRDN-RAREvolution Information Webinar
2026-05-27 12:00 - 13:00 (America/Edmonton)
Join us for our information webinar on May 27th, 2026 at 12PM MST/ 2PM EST.

A REAL disease, NOT imagined
2026-05-28 15:00 - 17:00 (America/Toronto)
IMAGINE spending years, or even your entire life, trying to figure out what is wrong with you while being told “it’s all in your head”. The Ehlers-Danlos Syndromes (EDS), are complex connective tissue disorders that are frequently misunderstood and stigmatized within the healthcare system.
This Canadian documentary explores the difficult reality of living with EDS, focusing on the common experience where patients spend years searching for an accurate diagnosis and adequate care. Through testimonials from patients and healthcare professionals, this project seeks to shift medical attitudes to ensure those affected receive the same quality of services as any other patient. EDS is not an imaginary disease!

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.

RareKids-CAN-From Evidence to Access: Do Lived and Clinical Experiences Shape HTA Decisions?
2026-06-02 15:00 - 16:00 (America/Edmonton)
This conversation will explore how patient and clinician perspectives are integrated into HTA evidence frameworks, how these insights influence decision-making in practice, and where opportunities remain to build more responsive and inclusive systems for rare disease communities.

NMD4C and MDC: Neuromuscular Mystery Case Rounds
2026-06-02 16:00 - 17:00 (America/Edmonton)
Join NMD4C and Muscular Dystrophy Canada at their next CPD-accredited webinar, “Neuromuscular Mystery Case Rounds,” on Tuesday, June 2nd, 2026 at 5:00 p.m. ET, with their speaker, Dr. Albert Yeung, Neuromuscular Clinical Fellow at the University of Alberta. This session will be chaired by Drs. Aaron Izenberg, Shafina Sachedina and Christen Shoesmith.

Muscular Dystrophy Canada- Working Together to Build E-Learning in Rare Neuromuscular Diseases: Lessons from Arthrogryposis
2026-06-11 17:00 - 18:00 (America/Toronto)
Muscular Dystrophy Canada is excited to host a webinar on building e-learning in rare neuromuscular diseases.
The objectives of this session are as follows:

Recognize the key principles of knowledge co-development, including respectful partnerships between people with arthrogryposis multiplex congenita (AMC), families, clinicians, researchers, and organizations.
Understand the value of multidisciplinary teams that include people with lived experience in creating and sharing knowledge that is relevant and meaningful to AMC.
Understand how educational resources in rare neuromuscular diseases are developed to support clear communication, combining scientific evidence and lived experience through accessible and engaging e-learning approaches.
Reflect on how co-development can strengthen communication and trust between people with AMC and clinicians, and how these ideas can be applied in care, education, advocacy, or research.

Building on Progress: Charting the Future of Canada's Rare Disease Strategy
2026-06-12 10:00 - 11:00 (America/Edmonton)
Leading experts and advocates will convene to discuss the critical insights, challenges, and opportunities in advancing Canada’s National Rare Disease Strategy. Drawing upon key findings from a recent national study, panelists will delve into the economic burden, the profound impact of delayed diagnosis on patient journeys, and the imperative for improved pathways, access, and research. The aim is to generate actionable insights and solutions for a more effective and equitable rare disease landscape for all Canadians as we look ahead to 2027 and beyond.

RareKids-CAN Advanced Therapy Medicinal Products (ATMPs) series: ATMP Webinar: A Practical Primer for Clinical Coordinators, Nurses & Pharmacists
2026-06-15 13:00 - 14:00 (America/Edmonton)
Designed for clinical coordinators, nurses, pharmacists, and research staff working in pediatric rare disease trials, this introductory session will provide a practical overview of:
🔹 Gene therapies, cell therapies, and antisense oligonucleotides (ASOs)
🔹 How ATMPs differ from traditional therapies
🔹 Key operational considerations for clinical teams
🔹 Strategies for explaining ATMPs in clear, accessible language

PONDA Pop-up-Rare Care: What Care Support looks like for Patients and Families Affected by Rare Disease and Rare Diagnoses
2026-06-16 14:30 - 15:30 (America/Edmonton)

Cystic Fibrosis Canada's 2026 Webinar: Spotlight on CF Research 2026
2026-06-17 12:00 - 13:30 (America/Edmonton)
Register now for Cystic Fibrosis Canada’s 2026 Spotlight on CF Research Webinar, offered in English and French with live simultaneous interpretation.

CORD Webinar: From Genomic Testing Readiness to Rare Disease System Readiness
2026-06-23 12:00 - 13:00 (America/Toronto)
Join Durhane Wong-Rieger (CORD) and Don Husereau (University of Ottawa) for a discussion on moving from genomic testing readiness to rare disease system readiness and shaping the next phase of Canada’s Rare Disease Strategy

CIHR: Information Webinar for Canadian applicants to the ERDERA Clinical Trial Call 2026
2026-07-07 10:00 - 11:00 (America/Toronto)
CIHR is hosting an information session to provide interested Canadian applicants with information on the requirements of the “ERDERA Clinical Trial Call 2026 (ECTC 2026)” funding opportunity and to answer questions on how to apply.

Spastic Paraplegia Foundation (SPF) TALKS w/ Dr Ziv Gan-Or/Neuro and Linda Lafontaine
2026-07-08 11:00 - 12:00 (America/Edmonton)

IMPaCT Webinar: Responsible Research Practices: How Reporting Guidelines Can Improve Child Health Trials
2026-07-09 12:00 - 13:00 (America/Toronto)
Register today for IMPaCT’s next webinar with Ami Baba, PhD, where she’ll discuss Responsible Research Practices: How Reporting Guidelines Can Improve Child Health Trials.
✅ Identify who needs trial reporting guidelines
✅ Introduce pediatric-specific reporting guideline extensions for trials and systematic reviews
✅ Describe how SPIRIT-C, CONSORT-C, TIDieR-C, and PRISMA-C can impact both upstream and downstream research processes

CORD Webinar: The Cost of Waiting: Socioeconomic Impact of Rare Disease in Canada
2026-07-14 10:00 - 11:00 (America/Edmonton)
CORD is pleased to invite you to our upcoming webinar, The Cost of Waiting: Socioeconomic Impact of Rare Disease in Canada . Join patients, caregivers, clinicians, researchers, policy makers and health system leaders for a conversation on the real-world impacts of delayed diagnosis and fragmented care, and what Canada can do to reduce the burden on families while building a more responsive rare disease system.

DNA2RNA: Generative AI to Predict and Engineer Human Tissues and Cells
2026-07-14 10:30 - 11:30 (America/Toronto)
Join D2R for this hybrid seminar with Professor Mo Lotfollahi from the Wellcome Sanger Institute and the Cambridge School of AI in Medicine at the University of Cambridge about “Generative AI to Predict and Engineer Human Tissues and Cells”.

Kabuki Syndrome Foundation Live Webinar: Together for Progress
2026-07-16 10:00 - 12:00 (America/Edmonton)
Join the Kabuki Syndrome Foundation at their upcoming live webinar, Together for Progress, on July 16, 2026. You can look forward to the latest updates on treatment development, learn about new resources for families and clinicians, and discover what’s next in their global efforts to improve the health of everyone with Kabuki syndrome.
