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.

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.

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.

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

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!

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.

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.

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

Rare Diseases International-Innovative Models Reshaping Access to Diagnosis, Treatment and Care - Practical examples and global case studies
2026-06-18 06:00 - 07:00 (America/Edmonton)
Scientific and medical advances in rare diseases continue to accelerate — but equitable access to diagnosis, treatment, and care remains out of reach for millions of people living with a rare disease.
This webinar offers a practical look at how innovative financing models can help close these gaps. The session will explore a range of financing mechanisms, including venture philanthropy, blended finance, public-private partnerships, solidarity funds, and outcome-based models. Through real-world examples, participants will gain insight into what makes these approaches work, the conditions needed for success, and how models can be adapted or combined across different health systems.

ERDERA Clinical Trial Call 2026: Information Webinar
2026-07-06 07:00 - 09:00 (America/Edmonton)
ERDERA will host an informational webinar on 6 July 2026. During this session, participants will have the opportunity to hear directly from ERDERA experts, who will present the objectives, scope, and requirements of the call, and address questions from prospective applicants.

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.

Dysautonomia International: Piece by Piece: Building the Future of Dysautonomia Care
2026-07-09 08:00 - 2026-07-12 17:00 (America/Chicago)
Join Dysautonomia International in Houston, Texas, July 9–12, 2026 for the 14th Annual Dysautonomia International Conference, the world’s largest conference on autonomic disorders.

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.

Health Canada Webinar: Real-World Evidence in the National Strategy for Drugs for Rare Diseases
2026-07-22 12:00 - 13:00 (America/Toronto)
This session is designed to provide you with a clear understanding of the goals, an update on progress, and the next steps as planning advances. It will include a short presentation from Health Canada followed by a Question & Answer session.

ERDERA Introductory Webinar: Situating ethics in the research continuum
2026-07-24 08:00 - 09:00 (America/Edmonton)
Join on 24 July for a free webinar and explore how ethics applies across different research activities, illustrated through a real-world case study that brings the concepts to life.

CORD Webinar: Building the Baseline: How Does Canada Measure Up in Terms of Rare Disease Readiness?
2026-07-28 10:00 - 11:00 (America/Edmonton)
Join CORD for an interactive 60-minute indicator lab exploring how Canada can measure progress in rare disease readiness. Together, experts and participants will examine and rate key policy and delivery indicators to identify what matters most, where data gaps exist, and what a national readiness baseline could look like. This session focuses on building a Canada-wide picture of rare disease readiness, not ranking provinces. Participants will help identify promising examples and shared opportunities for improvement as CORD develops a national readiness indicator inventory.

CORD: From Readiness to Action: The Capstone Consultation Before the Rare Readiness Scorecard Launch
2026-08-11 12:00 - 13:30 (America/Toronto)
Final Webinar in CORD’s 4-Part Summer Rare Disease Readiness Series
