Canadian Rare Disease Network

2025 NMD4C Annual Meeting
2025-09-11 08:00 - 17:00 (America/Toronto)
Registration is now open for the 2025 NMD4C Annual Meeting!
Join NMD4C in Ottawa on Thursday, September 11, for a full day of dynamic discussions, research updates, and networking opportunities—just ahead of the 7th Ottawa International Conference on Neuromuscular Disease & Biology.

2025 Pulmonary Hypertension Community Conference
2025-09-11 08:00 - 2025-09-13 17:00 (America/Toronto)
​Join PHA Canada’s 2025 PH Community Conference to explore how they can drive meaningful change and inspire hope across the PH community. This year’s event will feature powerful keynote speakers, interactive workshops, and engaging panel discussions—all designed to empower you with new strategies, the latest research, and stories of resilience and innovation.

Ottawa NMD 2025 Conference
2025-09-11 08:00 - 2025-09-13 17:00 (America/Toronto)
7th Ottawa International Conference on Neuromuscular Disease and Biology will take place at the Fairmont Château Laurier in Ottawa, Canada on September 11-13, 2025.
The Ottawa NMD 2025 conference will offer an outstanding program emphasizing recent breakthroughs in basic and translational research and clinical discoveries in neuromuscular disease.

2nd Edition of the Symposium on Genetic Medicine
2025-09-12 08:00 - 17:00 (America/Toronto)
This year, the symposium will be dedicated to rare diseases, a major topic in genetics.

OTCD-Gala for a Cure
2025-09-12 11:00 - 23:30 (America/Toronto)

Manchester Dysmorphology and Developmental Disorders Conference
2025-09-16 08:00 - 2025-09-19 17:00 (Europe/London)
The Manchester Dysmorphology Conference (MDC) is a biennial event that has brought together global experts in genomic syndromology since 1984. Established by Professor Dian Donnai, MDC promotes the exchange of knowledge and ideas to advance the understanding of developmental disorders and congenital malformations. Each conference offers leading-edge content and a supportive setting, encouraging discussions, building collaborations, and inspiring innovative strategies to improve the lives of individuals living with rare conditions.

Canadian Cystic Fibrosis Conference
2025-09-17 08:00 - 2025-09-19 17:00 (America/Edmonton)
Join CFC September 17 –19, 2025 for Cystic Fibrosis Canada’s first Canadian Cystic Fibrosis Conference, hosted in Calgary, Alberta.
The conference will spotlight the development of Canadian consensus and national standards for CF care, explore early implementation strategies, and highlight hot topics in healthcare and research and knowledge gaps that future research and clinical trials can address.

RareKids-CAN-Education Session: Family Engagement in Research Fundamentals
2025-09-17 14:00 - 15:00 (America/Toronto)
Join RareKids-CAN on September 17, 2025, from 2-3pm ET for their next education session, led by their Patient and Family Engagement Facilitators. This session is open to everyone interested in strengthening engagement practices. Don’t miss out!

EURORDIS Webinar: Patient Partnership 2025 – The Lupus100 Project
2025-09-18 18:00 - 19:00 (America/Edmonton)
The Lupus100 Project, recognized as a winner of the 2025 Patient Partnership Good Practice Challenge, highlights the crucial role of patient partnership in improving communication about rare diseases such as lupus.

2e Journée québécoise sur les sarcomes
2025-09-19 08:00 - 17:00 (America/Toronto)
La 2e édition de la Journée québécoise sur les sarcomes rassemble la communauté médicale et scientifique québécoise œuvrant dans le domaine des sarcomes. Il offre une occasion unique pour :

Assister à des conférences et présentations de pointe
Favoriser des collaborations interinstitutionnelles porteuses
Renforcer les liens entre chercheuses, chercheurs, cliniciennes et cliniciens pour maximiser notre impact collectif.

LHON Awareness Day 2025 Webinar: "Exploring the Power of Nutrition in Mitochondrial Diseases"
2025-09-19 15:00 - 17:00 (America/Edmonton)
This year’s theme focuses on how nutrition can support mitochondrial health. You’ll hear from experts across Australia, Italy, and Brazil, sharing practical strategies and the latest research relevant to LHON and other types of mito.

Undiagnosed Hackathon 2025
2025-09-21 08:00 - 2025-09-24 17:00 (America/Chicago)
350 million people live with an undiagnosed disease worldwide. Genome sequencing can provide answers for 40% of the People Living With Undiagnosed Disease (PLWUD) but around 60% still don’t receive a diagnosis. The purpose of the Undiagnosed Hackathon is trying to find new ways and collaborations to solve the undiagnosed diseases, that can’t be solved today. In this unique event multidisciplinary teams of clinicians, bioinformaticians/molecular biologists, scientists, developers, AI specialists and brilliant minds will work together to tackle the most difficult diseases.

Advancing Rare Disease Healthcare: Spotlighting the Economic and Health System Burden of Disease
2025-09-23 09:30 - 11:30 (America/Edmonton)
Please join this 1.5-hour live virtual meeting to hear esteemed faculty describe the global economic impact of rare diseases on patients and healthcare systems. Expert community advocates will also share their practical experience of advancing patients’ needs with key stakeholders. Panel discussion and audience questions will consider how to have meaningful impact in your country or region with patient healthcare experience data and insights to drive change in practice and better health outcomes for people living with rare disease. The live virtual meeting is further supplemented with published studies and content.

Connected in Care Conference
2025-09-24 08:00 - 2025-09-26 17:00 (America/Toronto)
As part of Pregnancy and Infant Loss Network’s long-term vision, Connected in Care are hosting their second biennial educational conference at the Sheraton Parkway Toronto North Hotel & Suites in Richmond Hill on Wednesday, September 24 – Friday, September 26, 2025.

6th Western Canadian Neuromuscular Conference
2025-09-25 08:00 - 2025-09-27 17:00 (America/Edmonton)
The 6th Western Canadian Neuromuscular
Conference is confirmed for 2026! Don’t miss
the opportunity to network with leading experts
and stay at the forefront of medical
advancements in the field of neuromuscular
diseases.

Biennial National Conference
2025-09-26 08:00 - 2025-09-28 17:00 (America/Edmonton)
Registration information coming soon.

Canadian Rare Disease Symposium: Preparing for Clinical Trials – International Regulatory Insights, and cGMP Gene Therapy Manufacturing capabilities in Canada
2025-10-01 13:00 - 16:00 (America/Toronto)
The Stem Cell Network (SCN) and the National Research Council Canada (NRC) are excited to contribute to the national conversation on cell and gene therapy for rare diseases. Building on the 2024 event titled “Canadian Rare Disease Ecosystem Symposium: Genetic Therapies for Rare Disease”, SCN and NRC are pleased to invite you to the Canadian Rare Disease Symposium: Preparing for Clinical Trials – International Regulatory Insights, and cGMP Gene Therapy Manufacturing Capabilities in Canada–a focused half-day event dedicated to advancing gene and cell therapy development in Canada through regulatory alignment and manufacturing readiness.
This virtual symposium will convene international regulatory authorities, Canadian manufacturing experts, and rare disease developers to explore two critical enablers of translational success: clinical trial readiness and cGMP manufacturing capacity.

CAGC & CCMG Joint Conference
2025-10-05 08:00 - 2025-10-08 17:00 (America/Edmonton)
The CAGC & CCMG Joint Conference will be a unique gathering of medical and laboratory geneticists and genetic counsellors with diverse expertise, all sharing a common interest in education and advocating for best practices in clinical and laboratory genetics. Through presentations, workshops, breakout sessions, abstract sessions, and engagement with industry partners, the event propels forward clinical practice, scientific advancements, and excellence across all aspects of genetics in Canada.

Global Alliance for Genomics and Health (GA4GH) 13th Plenary
2025-10-06 08:00 - 2025-10-10 17:00 (Europe/Paris)
GA4GH 13th Plenary will bring together the global genomics and health community for workshops, presentations, and keynote talks that uncover opportunities to scale genomic and clinical data sharing.

30th Annual International Congress of the World Muscle Society
2025-10-07 08:00 - 2025-10-11 17:00 (Europe/Vienna)
The World Muscle Society is a dynamic community that aims to promote, disseminate, and share all aspects of neuromuscular physiology and diseases, from basic science to patient care. It encompasses a broad range of scientists and healthcare professionals who share the common interest for neuromuscular disorders.

Rare Diseases International-Community Conversations on Mental Health
2025-10-10 07:00 - 08:00 (America/Edmonton)

A Conversation About Patient Partner Outsider Syndrome
2025-10-15 10:00 - 11:30 (America/Edmonton)
Patient/caregiver partnership in health research has evolved substantially since the launch of Canada’s Strategy for Patient-Oriented Research (SPOR) over a decade ago. However, findings from the Patient Advisors Network (PAN) “Reimagining the Research Landscape” report, commissioned by CIHR in 2024 for the SPOR Refresh, revealed that patient/caregiver partners often feel like outsiders in the research ecosystem. This webinar will take a deeper dive into the OSSU Research Day presentation “Why do patient/caregiver partners feel like outsiders?”
Ms. Maureen Smith will moderate a frank discussion between two of the report authors, Mses. Alies Maybee and Annette McKinnon, and PAN Board member Ms. Sandra Holdsworth, and leading patient-oriented researchers Drs. Manoj Lalu, Ambreen Sayani and Stuart Nicholls, on the barriers uncovered by the report and showcasing best practices to mitigate these barriers.

2nd Canadian Symposium on Neurofibromatosis
2025-10-16 08:00 - 2025-10-17 17:00 (America/Edmonton)
This Symposium is aimed at the patients and families, as well as clinicians and health professionals (doctors, nurses, researchers).

Aging Out: Transition of care for children with rare neurodevelopmental disorders
2025-10-16 12:30 - 13:30 (America/Toronto)
Approximately one in 12 Canadians are affected by a rare disorder and two thirds of them are children, according to the Canadian Organization for Rare Disorders (CORD). Due to the low number of individual cases, qualified specialists are hard to find. After years of assembling a trusted pediatric care team, parents are often faced with the challenge of finding a new adult care team once their child turns 18. The challenge is even more complex for rare neurodevelopmental disorders requiring multi-disciplinary care.
What strategies would ease the pediatric to adult care transition? This webcast will bring health care providers, medical experts and patient advocates together to share ideas and solutions to bridge the gap between pediatric to adult care for those living with neurodevelopmental disorders.

RareKids-CAN Coffee Chat: Digital Storytelling with Krystle Schofield
2025-10-16 20:00 - 21:00 (America/Toronto)
Join other parents, caregivers, and individuals impacted by rare diagnosis and rare disease on October 16 at 8 P.M. EST. and learn about digital storytelling. Learn from Krystle Schofield, a RareKids-CAN parent partner, B.C. mom, digital storytelling facilitator + photographer.

RQMO 2025 Education Day
2025-10-18 08:00 - 17:00 (America/Toronto)
Under the theme “Rare Diseases: Let’s Break Isolation Together!”, this event aims to build bridges between those who live the daily reality of rare diseases and those who accompany and care for them.

International Neurology Conference 2025 | Mental Health Conference, Thailand
2025-10-18 08:00 - 2025-10-19 17:00 (Asia/Krasnoyarsk)
Neurology & Mental Health conference 2025 is set to be held on the 18th and 19th of October 2025, in Bangkok, Thailand in hybrid mode, allowing everyone to gain knowledge and providing a platform for discussing the latest advancements in treatments and techniques, future and present challenges, and sharing invaluable experiences in Neurology and allied disciplines. The event will feature plenary lectures, speeches, research & technical presentations, and hands-on experience workshops to help shape the future of neurology & psychiatry.

KTDRR’s 2025 Virtual Knowledge Translation Conference
2025-10-20 13:00 - 2025-10-23 16:00 (America/Toronto)
This conference will look at different ways to make knowledge translation (KT) more effective and impactful. They seek presentations that will discuss how to measure the success of KT efforts, including involving users early on, working with people with disabilities, and customizing products and outreach to meet user needs. They’ll also look for presentations that talk about sharing KT content online, ensuring it’s credible, teaching digital literacy, spotting false information, and making sure disability is represented accurately. In addition, they encourage presentations that explore how technology can boost KT projects, such as using digital tools to build online communities, check text readability, and summarize research. They also welcome presentations that highlight the role of artificial intelligence (AI) in creating easy-to-understand summaries, organizing research, addressing AI bias, and writing effective prompts. Join them to discover new strategies and tools to enhance your KT efforts.

Building Bridges: Advancing Collaborative Pediatric Palliative Care
2025-10-22 08:00 - 17:00 (America/Toronto)
This pediatric palliative care symposium is for health care professionals interested in increasing their knowledge and skill in working with children with serious illness and their families.
The goal is to share research and clinical experiences that broaden the perspectives and collaborative efforts to enhance the care delivery in hospital, home and hospice.
Pediatric-focused clinician’s and adult palliative care clinicians most welcome

The World Orphan Drug Congress
2025-10-27 08:00 - 2025-10-29 17:00 (Europe/Amsterdam)
The World Orphan Drug Congress is the largest and most established orphan drug & rare disease meeting of its kind across the globe.
From cell and gene therapy, genetic testing, and market access, to real world evidence, this one meeting covers the whole orphan drugs value chain where science, government and manufacturers all come together to create groundbreaking progress.
