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Events

Welcome to our Events Calendar! Stay up-to-date with the latest happenings in the rare disease community in Canada and beyond. From webinar and conferences to workshops and other events, our calendar is your one-stop destination for all rare disease-related happenings. Explore upcoming events, mark your calendar, and join as we work together to make a difference in the lives of those affected by rare diseases.

Watch our walkthrough videos in English and French for guidance navigating the calendar HERE. 

Global Congress of the GANSID: November 8-9, 2024

GANSID Congress 2024 is the 2nd Congress of the Global Action Network for Sickle Cell & Other Inherited Blood Disorders (GANSID) taking place virtually to ensure all clinicians, people with hereditary blood disorders, and global advocates can participate from any part of the world.

Understanding Your Lab Results

Making sense of your lab tests involves more than just knowing why the test is done. It’s also important to understand what the results mean and what can affect the results.  Join the webinar to better understand how your results affect your treatment and help you to manage your MDS, AA or PNH.

2024 International Congress for Ataxia Research

Today marks the opening of the largest-ever scientific conference on ataxia research — the International Congress for Ataxia Research (ICAR) is welcoming a record-setting 600 attendees. The London-based conference runs through to November 15 and will be a comprehensive scientific review of new research into the ataxias, covering topics from advances in genetics and disease […]

Neuroinclusion at Work: Six Principles for Inclusion

In this presentation, facilitators will walk attendees through Six Principles that promote more supportive and, ultimately, successful work environments. In addition to explaining the basic concepts of each principle, attendees will receive practical, actionable ideas and strategies to apply the principles in your own workplace.

‘DBS in Dystonia – the network perspective’ by Juho Joutsa

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).

4th Annual Symposium for Researchers and Clinicians on Wiskott Aldrich Syndrome

San Raffaele Institute Milan, Italy

The fourth international symposium for researchers and clinicians on Wiskott Aldrich Syndrome is being held in Milan, Italy and offers access to the latest research and analysis related to this rare disease. Meeting participants will gain valuable insights into innovative perspectives in both basic and clinical research. The scientific programme will draw together experts from […]

The impact of rare conditions on self-identity

Living with a rare condition can significantly impact a person’s identity, as they may struggle to separate who they are from their condition. This internal conflict is often intensified during formative years, affecting self-perception and even sexuality. The stigma and discrimination associated with rare diseases, especially genetic ones, add further challenges. Carriers of genetic conditions […]

‘Autonomic dysfunction in movement disorders’ by Pietro Guaraldi

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).

ALS Research and Clinical Trials 101 Q&A Drop-In

This monthly Q&A drop-in session is available for people living with ALS, their families, caregivers, and anyone close to someone living with the disease who is seeking information or might have questions about ALS research and/or clinical trials.

Share your Event

Do you have an upcoming event, webinar, or conference relevant to the rare disease community in Canada? We’d love to feature it on this page!

Help us expand our calendar and ensure that rare disease happenings are accessible to all. Submit your event details

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