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.
The webinar series is all about patient engagement in health research, also known as patient and public involvement (in the UK) or consumer involvement (in Australia). 'Patient engagement’ in health research is where patients are research team members. This is different from volunteering to be a research participant where you might help advance research or […]
The CureDuchenne FUTURES National Conference is an annual event focused on bringing education, connection, and hope to the entire Duchenne community.
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!
The objectives of the world congress for rare disorders are: To learn on diagnosis (including pathophysiology and disease classification) To develop a multidisciplinary approach and improve their skills to manage common problems in rare and complex skin disorders To know more on last research findings and tools in the field of skin biology, genetics, therapeutics […]
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 […]
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 […]
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 […]
While each rare disease presents unique challenges, the common thread of stories and experiences unites us as a community. Global Genes rare storytelling initiative aims to empower individuals within the community with the tools to share their narratives through various mediums such as blogs, articles, in-person presentations, and podcasts.
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 […]
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