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!

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.

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.

Voices for Rare Advocacy Day
2026-05-13 07:30 - 09:30 (America/Toronto)
A day dedicated to bringing the voices of Ontario’s rare disease community directly to policymakers.

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.

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.

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.

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)
