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.
Th 2024 Living Rare, Living Stronger NORD Patient and Family Forum will be held in Los Angeles, CA at the Hilton Universal City on June 8. After six years, they are excited to bring this program to the west coast! This event will bring together the incredible rare disease community for a day filled with […]
Does your identity as LGBTQ+ intersect with your life as a rare disease patient, parent, caregiver or ally? Global Genes will be hosting a forum for stakeholders in the rare disease community to discuss their intersectionality as part of both the rare community and queer / LGBTQIA + community. Global Genes wanted to create a […]
The access and use of health data for research raises concerns related to privacy, commercial motives, equity and fairness for members of the public who want to know who is using data generated from their personal information and why. But despite concerns, there are clear benefits to using health data in research, including better patient […]
Join us for June's Journal Club discussing "Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood". Register here: http://bit.ly/3V57YJB Questions? Ask Sadia Ahmed (sadahmed@ucalgary.ca)
This conference is part of the Montréal Health Ethics Lecture Series 2024. It will be presented in English. How might we build more equitable and just futures for LGBTQ+ people and communities, and what does health care have to do with it? This talk explores the connections between care ethics, care practices, organizational cultures, and praxis—that is, […]
Human cell research is pivotal in the pain space as it offers unparalleled insights into the underlying molecular mechanisms by bridging the gap between traditional preclinical animal models of pain and those that suffer from pain in society. Fundamental research findings using these new human tissue approaches can lead towards the development of targeted therapies. […]
On Wednesday 10 July, Rare Barometer, the global survey initiative of EURORDIS – Rare Diseases Europe, will launch a new survey on the impact of rare diseases on everyday life. The survey will be open to all people living with any rare disease and their family members worldwide and will be available in 25 languages, from 10 […]
This event brings together leading researchers, healthcare professionals, patient advocates, policymakers, industry experts, and rare disease patients and families. The summit emphasizes the power of collaboration and solidarity in facing rare diseases.
Join our upcoming webinar for a sneak peek into Rare Disease Day 2025! On Wednesday 17 July we will be hosting three webinars throughout the day to cater to different time zones, so no matter where you are in the world, you can stay up to date on what to expect for the 2025 campaign. […]
Join us for "Applying Anti-Racism Principles in Health Care," on July 31, 12:00-2:00 p.m. EST/10:00 a.m.-12:00 p.m. PST. In this interactive workshop, Anna Hossain will be exploring systemic racism in the health care and research sectors. Key highlights: Recognize and understand the impacts of unconscious bias in health care interactions and relationships Understand the foundations of anti-racism and anti-oppression Gain […]
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 […]
On September 29, 2024, the 4th annual Canadian Regional Meeting will take place in Burlington, ON, for patients and families affected by ITP. The event will be held at the Courtyard Marriot. This meeting is a chance to meet other Canadian ITP patients and learn from Canadian ITP experts. If you are interested in registering […]
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