RQMO: 6th Zebinary of the Month of Zebra 2026
2026-02-19 10:00 - 12:00 (America/Edmonton)
Speaker: – Josée Chénard, TS, PH.d, Professor, Department of Social Work, Université du Québec en Outaouais

Canada's Drug Agency: How Global Policy Changes Are Reshaping HTA for Rare Diseases
2026-02-19 13:00 - 14:30 (America/Edmonton)
HTAi’s Rare Disease Interest Group will celebrate 2026 Rare Disease Day with a conversation on how global policy changes are reshaping HTA processes for rare disease technologies. The webinar aims to update the global HTA community on recent advances in rare disease policy, particularly following the adoption of the World Health Assembly (WHA) Resolution on Rare Diseases, and to explore its implications for HTA systems globally. The multi-stakeholder expert panel will discuss how global policy commitments can translate into meaningful regional, national, and local action within HTA. This event is the inaugural webinar in a year-long webinar series, catalyzing discussions on how legislative changes in health systems are reshaping HTA for rare diseases through regional real-world case studies and examples.

RQMO: 7th Zebinary of the Month of Zebra 2026
2026-02-24 10:00 - 12:00 (America/Edmonton)
Speakers: – Kim Auclair, consultant, speaker and blogger
– Elsie Côté, Founder and President of Sirote-moi

PhenoTips: Matchmaking for Rare Disease Diagnosis
2026-02-25 10:00 - 11:00 (America/Edmonton)
Matchmaking for Rare Disease Diagnosis is a panel discussion and interactive Q&A with patient matchmaking pioneers, Dr. Nara Sobreira, Matthew Osmond, CGC, and Dr. Orion Buske.

RQMO: Last Zebinary of the Month of Zebra 2026
2026-02-26 10:00 - 12:00 (America/Edmonton)
Speaker: – François Bernier, entrepreneur, strategist, co-founder of Horizon b2b

CORD Rare Disease Day 2026 Webinar
2026-02-27 10:00 - 11:00 (America/Edmonton)
ACCELERATED ACCESS TODAY, DEMONSTRATING VALUE FOR 2026 AND BEYOND
This Rare Disease Day, join CORD for a 1-hour webinar marking the first 1.5 years of Canada’s Rare Disease Drug Strategy (RDDS). The session celebrates progress in accelerated access while focusing on what comes next: demonstrating value.

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.

Stem Cell Network: Clinical Translation in Cell and Gene Therapy
2026-03-04 11:00 - 12:30 (America/Edmonton)
Stem Cell Network and BioCanRx are pleased to present this webinar on clinical translation, offering trainees, early-career investigators, and researchers a high-level introduction to how cell and gene therapies (including regenerative medicine and cancer biotherapeutics) move from the lab to clinical trials.

McMaster University Workshop-Measuring the Impacts of Engaging People with Lived and Living Experience
2026-03-06 09:00 - 16:00 (America/Toronto)
Join this in-person workshop focused on how to measure and evaluate the impacts of engaging people with lived and living experience in health research, systems, and policy.
The session will share practical approaches, real-world case examples, and lessons learned from engagement evaluation. Participants will learn how to select and apply evaluation tools to measure impact and address common challenges.

RareKids-CAN: Rare Methods Workshop Series: Eliciting prior distributions for rare disease clinical trials
2026-03-11 13:00 - 14:00 (America/Toronto)
Are you a rare disease methodologist, investigator or trainee? Join RareKids-CAN and speaker Arlene Jiang for a Rare Methods Workshop on expert elicitation in rare disease research on March 11.
Learn what expert elicitation is, how it can support rare disease clinical design and how expert input can be used to construct a prior distribution.

CAN-Child: F-words Foundations Workshop
2026-03-12 10:00 - 13:00 (America/Edmonton)
Join CAN-Child’s interactive 3-hour F-words Foundations Workshop and explore how to bring the F-words for Child Development—Functioning, Family, Fitness, Fun, Friends, and Future—into everyday practice and life!

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”.

RARE.Qc's Scientific Day and Annual General Meeting
2026-03-27 08:00 - 17:00 (America/Toronto)
The event will take place in the Cruess Amphitheatre and the Elspeth McConnell Atrium at the Research Institute of the McGill University Health Centre (RI-MUHC) in Montréal, and will also be offered in a virtual format.

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.
