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.

Ehlers-Danlos Syndrome (EDS) Research Symposium
2026-04-09 08:00 - 2026-04-10 17:00 (America/Edmonton)
The Ehlers-Danlos Syndrome (EDS) Research Symposium is a two-day event, April 9-10, designed to bring together clinicians, researchers, students, patients, and community partners to examine current research, clinical challenges, and emerging approaches to the diagnosis and management of the Ehlers-Danlos syndromes.⁠
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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.

Wilson Disease Association Spring Support Symposium
2026-04-11 08:00 - 17:00 (America/Edmonton)
Join the WDA Spring Support Symposium in Ann Arbor, Michigan, on April 11, 2026, to hear directly from patients and a caregiver as they share their real-life stories.

3rd Symposium on Autoinflammation and Immune Dysregulation: “Celebrating Autoinflammation: On the Shoulders of a Giant
2026-04-16 08:00 - 2026-04-17 17:00 (America/Toronto)
This 3rd NIH Symposium on autoinflammatory and immunedysregulatory diseases marks a unique occasion to honor Dr. Dan Kastner, the founding father of autoinflammation, for his invaluable contributions in establishing and advancing the field.

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.

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.

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!

Ehlers-Danlos Society: Biobank Research Event
2026-05-04 08:00 - 2026-05-08 17:00 (America/Los_Angeles)
This initiative supports research into the different types of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) by collecting biological samples and health information from people with and without these conditions. ⁠

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.

International Drug Repurposing Conference 2026
2026-05-12 08:00 - 2026-05-13 17:00 (Europe/Brussels)
Join the leading international drug repurposing conference to explore the future of patient-centric medicines repurposing.
From rare diseases and AI-driven drug discovery, to policy, funding and community-led success stories, iDR26 brings together the global drug repurposing community to navigate the next chapter in maximising patient benefit.

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.

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

15th edition of the International Myotonic Dystrophy Consortium (IDMC-15)
2026-05-26 08:00 - 2026-05-30 17:00 (Asia/Karachi)
The event will now make a stop in Canada, in the picturesque and warm Saguenay—Lac-Saint-Jean region of the province of Quebec.
A unique opportunity to network and share advances and initiatives in myotonic dystrophy research! Take advantage of this not-to-be-missed event!

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.

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)
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.

Planning Orphan Device Development Using the GAITS Framework
2026-06-02 09:00 - 10:00 (America/Toronto)
This webinar kicks off a new joint EU4Health webinar series on paediatric and orphan devices! Three EU4Health projects, i4Kids4Rare, DeCODe, and OrphaDev4KIDS have joined forces to deliver a series of expert webinars on planning, regulation, and clinical pathways for paediatric and orphan devices.

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.

Canadian Genomics Innovation Showcase
2026-06-02 16:00 - 20:00 (America/Toronto)
​Join the Consulate General of Canada in Boston for an exclusive program showcasing the strength and momentum of Canada’s genomics and life sciences ecosystems.

Brain-Heart Interconnectome (BHI) State of the Science Summit
2026-06-08 08:00 - 2026-06-10 17:00 (America/Toronto)
The summit is an international conference meant to highlight the latest science at the crossroads of brain and heart health, showcasing innovation and state-of-the-art research.
