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)

'Neuro-opthalmological presentations of ataxia and other rare neurological disorders' by Tatiana Brémovà-Ertl
2026-06-16 19:00 - 20:00 (America/Edmonton)
Educational webinars on rare neurological, neuromuscular and movement disorders jointly organized by the European Reference Networks for Rare Neurological Diseases (ERN-RND) and Neuromuscular Diseases (ERN-EuroNMD) and the European Academy of Neurology (EAN).

Regroupement québécois des maladies orphelines: NRGI - open science to understand common and rare neurological disorders
2026-06-17 10:00 - 11:00 (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.

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.

4th Edition of the Sickle Cell Awareness Day Education Conference
2026-06-18 08:30 - 17:00 (America/Toronto)
The Sickle Cell Disease Association of Canada (SCDAC), in partnership with the Interdisciplinary Centre for Black Health (ICBH), is bringing the sickle cell community together at the University of Ottawa for a one-day gathering of learning, collaboration and action.
This conference brings together patients, families, healthcare professionals, researchers, advocates, educators and caregivers.

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

RARE REV-inar episode 027 - Living with systemic mastocytosis
2026-06-26 07:00 - 08:00 (America/Edmonton)

RareKids-CAN: Kids Rare Disorders Awareness: Supporting Early Recognition & Families in Nova Scotia
2026-06-27 13:00 - 14:00 (America/Halifax)
Join RareKids-CAN Clinical Trial Navigator Ameen Abdelmajid of the IWK Health for a series of community information sessions in partnership with Halifax Public Libraries.
These free sessions are designed for families, caregivers, and community members interested in learning more about pediatric rare diseases, the diagnostic journey, available supports, patient advocacy resources, and opportunities to participate in research and clinical trials.
📍 Multiple Halifax Public Library locations throughout June and August

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

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.

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.

RareKids-CAN: Delivering Gene Therapy Trials: Understanding Clinical Workflows, Operations, and the Patient Journey
2026-07-22 12:00 - 13:00 (America/Toronto)
Join RareKid-CAN on July 22nd for their second webinar in our ATMP series for research coordinators, nurses, pharmacists, investigators, and other clinical research professionals.
Their speaker Ana Stosic will provide a practical overview of the clinical workflows involved in delivering gene therapy clinical trials for pediatric rare diseases.

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
