Canadian Rare Disease Network

6th International Hypothalamic Hamartoma Symposium
2025-09-04 08:00 - 2025-09-05 17:00 (America/Belize)
Presented by Hope for HH and Hospital Sant Joan de Déu Barcelona, this symposium will gather leading experts, patients, and caregivers from around the world to share the latest research, clinical advances, and treatment strategies for Hypothalamic Hamartoma (HH)! Alexis Arzimanoglou and Helen Cross are part of the Symposium Committee.

Rare Trials Summit
2025-09-09 08:00 - 2025-09-10 17:00 (America/Edmonton)
Bringing together key stakeholders in the clinical research community to accelerate the development of new rare disease therapies from average 10-12 years to under 3 years.

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.

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.

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.

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

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)

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.

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.

Screen4Rare: Making AI Diagnosis Understandable
2025-11-04 05:30 - 07:30 (America/Edmonton)
A co-creation workshop inviting non-AI experts to help design communication tools such as videos and brochures that make AI-supported diagnosis more understandable, trustworthy and human.

Webinar: Health Financing & Social Health Protection for Rare Diseases
2025-11-05 06:00 - 08:00 (America/Edmonton)
Rare Diseases International (RDI) and the P4H Network have partnered to enable global advocacy and collaboration to influence and support innovation in health financing arrangement and social health protection that concretely promote effective health coverage, increased access and adequate financial protection for people living with rare diseases.

IPIC 2025
2025-11-05 08:00 - 2025-11-07 17:00 (Europe/Helsinki)
IPIC is one of the leading international congresses on primary immunodeficiency (PID) diagnosis and clinical care with a unique approach to its scientific programme underpinned by its focus on patient-centredness. With a truly international impact, the congress has earned its definite place and role in the PID clinical landscape.

42nd International Conference on Advances in Psychiatry and Mental Health
2025-11-10 08:00 - 2025-11-11 17:00 (Asia/Dubai)
This premier event will bring together leading experts, researchers, and mental health professionals to explore innovative approaches and emerging trends in the field of psychiatry. Psychiatry Conference 2025 cordially invites all psychiatrists, psychologists, researchers, clinicians, mental health professionals, neuroscientists, healthcare practitioners, academicians, and industry experts to join us on November 10-11, 2025, in Dubai, UAE.

3rd Edition on International Neurology Conference 2025 in USA
2025-11-15 08:00 - 2025-11-16 17:00 (America/New_York)

ITINERARE Symposium 2025
2025-11-18 08:00 - 17:00 (Europe/Zurich)
The programme features experts from a variety of fields, ranging from basic and translational research to clinical application and the ethical, social and legal aspects of rare disease research.

36th International Symposium on ALS/MND
2025-12-05 08:00 - 2025-12-07 17:00 (America/Los_Angeles)
The International Symposium is the biggest annual conference dedicated to ALS and MND research. Each year they bring together researchers from around the world to share new understanding of amyotrophic lateral sclerosis and motor neurone disease.

Webinar: 'The importance of genetic counselling in the diagnostic of rare neurological disorders' by Maria Judit Molnar
2025-12-09 07:00 - 09:00 (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).

2nd International Conference on Clinical Research Networks (CRNs) for Rare Diseases
2025-12-09 08:00 - 2025-12-10 17:00 (America/Edmonton)
This second edition will convene a wide range of international experts, including researchers, clinicians, patient advocates, industry representatives, policymakers, and funders to strengthen the collaborative ecosystem that underpins clinical research in rare diseases worldwide.

ERDERA: Joint Transnational Call 2026
2025-12-16 15:00 - 17:00 (America/Edmonton)
This information webinar on the 2026 Joint Transnational Call for Proposals is scheduled for 16 December 2025, 15:00–17:00 CET, focusing on resolving unsolved rare genetic and non‑genetic diseases.

Webinar: Lymphodepletion for CAR-T/IEC Outcomes
2025-12-17 12:00 - 14:00 (America/Toronto)
Achieving consistent and effective outcomes in CAR T and other immune effector cell (IEC) therapies relies heavily on getting lymphodepletion “right.” Emerging evidence shows that both under- and over-exposure can impact safety, efficacy, and long-term persistence, making optimized dosing strategies increasingly critical as the field evolves.
This webinar will explore how model-informed and data-driven approaches can help identify the optimal lymphodepletion exposure window, improve predictability, and support more standardized practices across patient populations and treatment centers. Speakers will discuss current challenges, scientific rationale, clinical insights, and practical considerations for implementation.

CMT episode 1: Challenges in the diagnosis and treatment of inherited neuropathies
2026-01-08 08:00 - 09:00 (America/Edmonton)
Delivered by Dr. Davide Pareyson (Fondazione IRCCS Istituto Neurologico C.Besta (FINCB), Milan, Italy) & Dr. Filippo Genovese (The European Charcot-Marie-Tooth Federation & ACMT-Rete per la malattia di Charcot-Marie-Tooth OdV), Thu 08 Jan 2026 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology.

RealiseD Webinar 1: Realising Clinical trials in Ultra-Rare diseases
2026-01-13 17:00 - 18:30 (America/Edmonton)
Join RealiseD’s first webinar to learn how RealiseD is pioneering a collaborative and comprehensive approach to clinical trials in ultra-rare diseases. During the webinar, they’ll walk you through the project’s objectives, structure, and methodologies—and show how you can be part of this transformative journey.

Rare Disease Internation-Moving the WHA Resolution on Rare Diseases Forward: From Promise to Action
2026-01-15 05:30 - 06:30 (America/Edmonton)
Join RDI for this public webinar where they will discuss the current status of the WHA Resolution implementation, as they approach the World Health Organization Executive Board meeting taking place in February 2026. This webinar will engage in a multistakeholder dialogue focusing on the necessary path forward to accelerate the implementation of the Resolution and importantly the development of the GAPRD.

CMT episode 2: Progress in genetic diagnosis for neuropathies
2026-01-15 08:00 - 09:00 (America/Edmonton)
Delivered by Dr. Andrea Cortese (University College London, Department of Neuromuscular Diseases, UK), Thu 15 Jan 2026 at 16:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology.

RealiseD Webinar 2: Evidence Assessment Framework. A need to change mindset from developers, regulators and HTA
2026-01-20 17:00 - 18:30 (America/Edmonton)
The second webinar turns the spotlight on one of the most critical issues in rare disease research: the generation and assessment of evidence. François Meyer, a leading consultant in health technology assessment, will examine why current frameworks often fail to deliver predictable and aligned outcomes, resulting in delays and inequalities in patient access. The session will explore the global and European initiatives aimed at addressing these shortcomings and present the RealiseD consortium’s efforts to advance scientific and operational solutions. More importantly, it will advocate for a fundamental shift in mindset—one that embraces flexibility and innovation in the way evidence is generated, interpreted, and assessed.

CMT episode 3: Bioarkers and outcome measures for clinical trial readiness in CMT
2026-01-22 08:00 - 09:00 (America/Edmonton)
Delivered by Prof. Mary Reilly (University College London, Department of Neuromuscular Diseases, UK), Thu 22 Jan 2026 at 17:00 Paris Time This is a EURO-NMD webinar in collaboration with ERN-RND (rare neurological disorders) and European Academy of Neurology.

ERN-EuroBloodNet-Session 1: Strong at Any Age – Redefining Frailty Together
2026-01-22 17:30 - 18:30 (Europe/Belgrade)
EuroBloodNet Topic on Focus: Ageing with a Bleeding Disorder”!
This educational program is coordinated by ERN-EuroBloodNet together with the umbrella patient organisation EHC – European Haemophilia Consortium, represented by ePAG advocate Marius Tanase.
