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.
Patient Focused
Calendar of Events
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The event will now make a stop in Canada, in the picturesque and warm Saguenay—Lac-Saint-Jean region of the province of Quebec. A unique opportunity to network and share advances and initiatives in myotonic dystrophy research! Take advantage of this not-to-be-missed event! |
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This inaugural national conference brings together leading experts from Canada and beyond to explore the physiological and psychological complexities of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS). |
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Take a Pain Check Foundation is thrilled to invite you to Unity Through Rheumatic Diseases, an in-person event dedicated to promoting collaboration and driving change in rheumatology. Join us on Saturday, May 31, 2025, from 8:00 AM to 5:00 PM EST at the InterContinental Toronto Centre (225 Front St W, Toronto, ON M5V 2X3) for a day of insightful discussions, […] |
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Join researchers, clinicians, and industry leaders to discuss real-world research breakthroughs, novel #ClinicalTrial designs, and how NORD's Rare Disease Centers of Excellence are leading collaborative efforts in #RareDisease innovation. |
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This event will highlight innovative, patient-oriented strategies designed to address fragmented care for brain and heart conditions. Although brain and heart health are closely linked, the heath care system often treats them in isolation. This Café Scientific will showcase how research is driving real-world solutions that enhance patient care. |
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The newly formed Canadian chapter of Wilson Disease Association is hosting a one day conference for WD patients, caregivers, friends, medical students, physicians and supporters. They are bringing together the top Canadian doctors who treat Wilson disease. Great opportunity to network and learn more about treatment options for Wilson disease. More details and registration link […] |
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Join the Superficial Siderosis Research Alliance (SSRA) for a three-day symposium dedicated to patients, caregivers, clinicians, and researchers focused on advancing care, treatment, and research for superficial siderosis. |
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Join NORD on Thursday, June 12 at 4 p.m. ET for a virtual conversation about the #LivingRareStudy. This session will guide you through joining the first large-scale study in the U.S. focused on tracking the real-life experiences of individuals and caregivers impacted by #RareDiseases, including how to create an #IAMRARE account, review the consent form, […] |
2 events,
FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a networking meeting for FSHD patients and their families. It is a great opportunity to connect with other patients and families across Europe. |
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Speakers: Evdokia Anagnostou and Mayada Elsabbagh Title: Key considerations for including pediatric populations with neurodevelopmental conditions in clinical trials
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In anticipation of Global ALS Awareness Day on June 21, join ALS Canada’s CEO Tammy Moore and the ALS Canada Team for a free, insightful webinar. Discover the comprehensive services and programs ALS Canada offers to Canadians living with and affected by ALS. This engaging session will cover all mission areas, including community services, advocacy, […]
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This annual event celebrates the innovative work and powerful stories emerging from the rare disease community – uniting patient groups, researchers, clinicians, industry professionals, and more from across the UK and beyond. |
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Join Defeat Duchenne Canada for an educational webinar featuring Dr. Jahannaz Dastgir, Executive Director of Clinical Development at REGENXBIO, as she shares the latest updates on RGX-202, an investigational gene therapy for the treatment of Duchenne muscular dystrophy, and their Phase 1/2/3 AFFINITY DUCHENNE® trial. This session will provide valuable insights into the science behind […] |
2 events,
The Festival is designed principally for scientists and clinicians who are working in the fields of genomics, other omics, and/or using biodata , to further research, drug discovery, healthcare and – ultimately – deliver better patient outcomes. Topics covered include genomics, single cell/spatial biology, multiomics, biodata, cancer research, drug discovery, AI, microbiome, proteomics, liquid biopsy and so […] |
3 events,
The Choroideremia Research Foundation (CRF) cordially invites you to join them June 25 – 28, 2025, for their International Conference at the Radisson Blu Mall of America in Bloomington, MN. This event seeks to improve the quality of life for all those impacted by choroideremia (CHM) through educational programming, interactive engagement and networking. |
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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
HERE!