Palliative Care Webinar
Join Jett Foundation’s Community Webinar Series on June 13 to hear from Dr. Ashley Nichols on palliative care, a medical care focused on relief from pain and symptoms of illnesses and diseases.
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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.
Webinars
Gene Therapy Webinar Series: Episode 8 – Genetic therapies and therapy developments for ALS
Dr Vázquez Costa has a MD in Neurology (2012) and PhD in motor neuron diseases (2019). Since 2013 he is devoted to the care of motor neuron disease patients and in 2020 he was granted a Juan Rodés excellence contract from the Carlos III Health Institute, to coordinate the motor neuron disease unit at Hospital […]
Is this okay? Community attitudes on using health data in research in Canada and Australia: A cross-cultural exchange
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 […]
Being a sibling of a youth with a neurodisability: A qualitative study about the roles and responsibilities during the transition to adulthood
Join 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". Ask Sadia Ahmed (sadahmed@ucalgary.ca)
Alberta SPOR Support Unit – Patient Engagement Team Journal Club
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)
Gene Therapy Webinar Series – Episode 11: Safety issues in gene therapies and how to address them
Professor Francesco Muntoni is a Paediatric Neurologist with an interest in clinical, pathological and molecular aspects of neuromuscular disorders. He is the director of the Dubowitz Neuromuscular Centre, a leading clinical and research institution for children affected by neuromuscular disorders. At the centre more than 1,600 children affected by neuromuscular diseases are assessed every year […]
Hidden in Plain Sight: Autosomal Dominant Tubulointerstitial Kidney Disease
C-Path’s Rare and Orphan Disease Programs is excited to have Dr. Anthony Bleyer present their June webinar, “Hidden in Plain Sight: Autosomal Dominant Tubulointerstitial Kidney Disease (ADTKD).” Dr. Bleyer is a Professor of Internal Medicine/Nephrology at Wake Forest University School of Medicine, with adjunct appointments at the Broad Institute of Harvard Medical School and Massachusetts Institute […]
LGBTQ+ Health Care Praxis: Building More Equitable and Just Futures Today
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, […]
Solve-RD workshop: Strategies for omics data analysis & reanalysis
The strategies developed for Solve-RD for omics data analysis and reanalysis will be presented. There will be a discussion on challenges, advantages as well as future developments.
June National Pain Round: The Science of Pain – Learning from Human Cells
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. […]
Caregiver Connextion
Join Jett Foundation’s monthly virtual support group for parents, family members or caregivers of females who have been diagnosed with Duchenne muscular dystrophy or are symptomatic carriers.
RITA Patient-Centered: Social rights of a person with a rare disease and the patient perspective in advocacy, the case of Malta
The new ERN RITA Patient-Centered Webinar Series is made by the Education Working Group with patients advocates active in the ERN RITA and focuses on the unique needs and challenges faced by immunological rare disease patients and their caregivers. For this next session, they will have Raquel Castro, Social Policy and Initiatives Director at EURORDIS-Rare […]
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