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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. 

Cavernous Malformation Canada – 2024 Patient Conference

SickKids Hospital Peter Gilgan Centre for Research and Learning 170 Elizabeth St Toronto, ON M5G 1E8, Canada, Toronto, Ontario, Canada

This year our patient conference is ONE DAY ONLY, with optional activities happening Saturday. Keynote by Dr. Brent Derry, many expert presentations, and lunch with the scientists, as well as time to mingle with other patients.

Platelet Disorder Support Association-ITP Conference 2024

The Westin Riverwalk San Antonio, TX, United States

This year, PDSA will host its 24th annual update on immune thrombocytopenia (ITP) for patients, caregivers and the medical community in San Antonio, Texas July 26-28. This year’s patient conference will take place at The Westin Riverwalk in downtown San Antonio. Each year the ITP conference provides opportunities to hear the latest information about ITP, […]

21st BI-ANNUAL NATIONAL SCLERODERMA CONFERENCE

St John's Conference Centre St John's, Newfoundland, Canada

Held in beautiful St. John’s, NL, the 21st Bi-Annual National Scleroderma Conference offers an information-rich opportunity for people living with scleroderma, their caregivers, family members, friends, and medical professionals.  ​Research updates, panel discussions, keynotes, workshops, and other educational sessions are led by leading scleroderma researchers, healthcare professionals and other industry leading professionals. Whether you are […]

PxP 2024 Conference (For Patients, By Patients)

Standing for ‘For Patients, By Patients’, PxP 2024 is entirely led by an international team of patient and public partners and is a Patients Included™ event. Our purpose is to share resources, mentorship and community with patient partners and others involved in health research. Ultimately, our goal is partnering to make research stronger. This free, […]

Week in RARE: RARE Advocacy Summit and Health Equity Forum

Kansas City Kansas City, MO, United States

Global Genes is on the move — Week in RARE is moving to Kansas City, Missouri in 2024. Week in RARE combines the RARE Health Equity Forum and RARE Advocacy Summit, in addition to the RARE Champions of Hope awards ceremony and annual membership meetings for Global Advocacy Alliance and RARE Corporate Alliance. This is […]

PxP Webinar 3 2024: Different opportunities to engage as a patient partner

The webinar series is all about patient engagement in health research, also known as patient and public involvement (UK) or consumer involvement (Australia). It is worth mentioning that ‘patient engagement’ in health research is distinctly different from signing up to be a research participant. Taking part in a study as a participant (for example trying […]

ERDERA Joint Transnational Call 2025 Information Webinar

This Webinar will: Provide general information on the call, including its scientific goals, administrative aspects, support services, and patient engagement strategies. Address your questions through two dedicated Q&A sessions.

CIHI-Foundations of Patient Partnering Virtual Sessions

Calling all patient and family partners! Are you interested in attending a training session to learn about foundational patient engagement concepts, participate in skill-building activities, and network with other patient and family partners? Consider signing up for a free 3-hour virtual training session developed in collaboration by CIHI and the Patient Advisors Network (PAN).

CIHI-Foundations of Patient Partnering Virtual Sessions

Calling all patient and family partners! Are you interested in attending a training session to learn about foundational patient engagement concepts, participate in skill-building activities, and network with other patient and family partners? Consider signing up for a free 3-hour virtual training session developed in collaboration by CIHI and the Patient Advisors Network (PAN).

PxP 2025 Webinar Series. The patient perspective: Barriers and facilitators to patient partnership in research

The webinar series is all about patient engagement in health research, also known as patient and public involvement (UK) or consumer involvement (Australia). It is worth mentioning that ‘patient engagement’ in health research is distinctly different from signing up to be a research participant. Taking part in a study as a participant (for example trying […]

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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