
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
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Platelet Disorder Support Association (PDSA)-Immune Thrombocytopenia Conference 2025
This year, PDSA will host its 25th annual update on immune thrombocytopenia (ITP) for patients, caregivers and the medical community in Philadelphia, PA July 25-27. This year’s patient conference will take place at The Logan, Philadelphia, in the Center City District.
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Community of Practice- Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research
📢 On July 30th from 12:00 - 1:00 pm EST Emine Kocabas, Ashley Berger, & Vishma Sookdeo will be speaking about “Beyond Inclusion: Co-Designing with Lived Experience to Build Meaningful Partnerships in Stroke Research”.
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7th International Indigenous Voices in Social Work Conference 2025 One Child Every Child: Indigenous Ways of Knowing, Doing, Connecting, and Being for Advancing the Well-Being of Our Future Generations
Situated between the Rocky Mountains and prairielands of Treaty 7 Territory in what we now call Southern Alberta, Canada, the 7th International Indigenous Voices in Social Work (IIVSW) Conference is a vital forum for sharing Indigenous perspectives and experiences in the field of social work. This global gathering brings together a diverse and inspiring community […]
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ALS Canada: Driving & ALS Webinar
Join ALS Canada and Sunnybrook Health Sciences Centre to learn about the impact of ALS on driving ability, adaptive driving equipment, how an ALS diagnosis may affect insurance, and available alternative options.
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PxP Africa 2025: Virtual Meeting August 13, 2025 From Research Participants to Patient Partners in Research: Centering African Patients Voices
PxP Africa is the first regional PxP meeting, led by Joab Wako and Kwanele Asante who are members of the 2025 steering committee for the global PxP conference taking place in September. PxP Africa will spotlight the critical role of patient partners—especially African patients—as active contributors in research, not just research participants. The session will […]
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PxP Australia 2025
PxP Australia is a regional webinar, led by Letisha Living and Janelle Bowden who are members of the 2025 steering committee for the global PxP conference taking place in September. The theme of PxP Australia is "working well together" and Dr. Joan Carlini will be joining the session as a speaker.
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2025 Transdisciplinary Child & Maternal Health Trainee Research Day
Led by the Alberta Children's Hospital Research Institute Trainee Association (ACHRITA) in partnership with the Owerko Centre and ACHRI, the graduate portion of this symposium is funded by UCalgary's Graduate Students' Association.
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Webinar: Patient Partnership 2025 – The Lupus100 Project
Co-developed by ERN ReCONNET and LUPUS EUROPE, The Lupus100 Project is a multilingual resource based on real patient questions about lupus, turning a national patient booklet into a Europe-wide, medically validated information tool. Speakers Eric Hachulla (clinician, ERN ReCONNET), Jeanette Andersen (patient representative, ERN ReCONNET), and Zoe Karakikla-Mitsakou (General Secretary, Lupus Europe) will share how meaningful collaboration […]
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WHA Resolution Coalition Webinar: Turning the WHA Resolution on Rare Diseases into Action
This Coalition webinar will further discuss the formalization of the Coalition as well as the updates and next steps in the implementation of the WHA Resolution on Rare Diseases and the development of the Global Action Plan.
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2025 RARE Drug Development Symposium
Rare disease patient advocates are taking the lead in research like never before, driven by the urgent need for new treatments. The RARE Drug Development Symposium hosted by Global Genes in partnership with Boston Children’s Hospital is designed to equip advocates with the knowledge, skills, and connections to navigate early-stage research with confidence. During this […]
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!