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.
Join IMAGINE SPOR tomorrow for Dr. Deborah Marshall's (Steering Committee Member) session on : "IMAGINE Patient Training Experiences Through the PaCER Program" at the 2024 Northwest SPOR Collaborative Forum!
As new clinical trials emerge for Charcot-Marie-Tooth disease (CMT), the importance of optimizing measures, endpoints and the participant experience has never been more urgent! Hereditary Neuropathy Foundation (HNF) is committed to de-risking upcoming trials by bridging the gap between clinical trial study teams and patient perspectives and experiences. This impact-driven summit is a chance for […]
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, […]
Cell and gene therapy represent intersecting fields of biomedical research with the shared goal of treating, preventing, or curing diseases. These approaches are aimed at understanding the underlying causes of various diseases, ranging from rare and complex conditions to those with genetic or acquired origins. This rapidly expanding treatment approach is poised to address significant […]
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 […]
PRISMS 12th International Conference is the largest conference specifically focused on Smith- Magenis Syndrome (SMS) in the world. The conference goal is to educate and share information about SMS while providing opportunities for engagement and community amongst SMS families and professionals. This educational and family support multi-day event is a critical program for the SMS […]
We invite you to our next UDNF Tell Me More Lecture Series on Thursday, July 11th at 12:00 p..m. ET for Why is Obtaining a Diagnosis Challenging? – Navigating the Uncharted Waters of an Ultra Rare Disease. Are you an undiagnosed patient who has been on a long diagnostic odyssey? Come join us for a discussion […]
Webinar objectives: 1. Understand the role that historical and ongoing marginalization play in research participation 2. Discuss how research findings in homogeneous populations are not generalizable to all children 3. Describe research approaches that can improve diversity and inclusion in pediatric clinical trials
Please join Sumaira Ahmed, NMOSD patient and founder of The Sumaira Foundation, for a panel discussion featuring five patients living with rare neuroimmune conditions. Patient perspectives and lived experiences are essential to guiding R&D efforts and generating real-world evidence for therapeutic advances. This is especially true for rare diseases such as NMOSD, MOGAD, autoimmune encephalitis […]
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.
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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