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.
12 events found.
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.
Patient Focused
Events
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IRSF Rett Syndrome Scientific Meeting
westminister Westminister, CO, United StatesPart of ASCEND 2024, the IRSF Rett Syndrome Scientific Meeting brings together scientists and researchers studying Rett syndrome and related areas from around the world. During this 2-day meeting, attendees representing academia, industry, and governmental agencies will share their latest research advances and discuss ways to leverage learning in the lab to be rapidly deployed […]
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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 […]
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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)
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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)
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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, […]
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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. […]
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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.
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MitoMed Conference 2024
Hilton Cleveland Downtown Cleveland, OH, United StatesEach year, the United Mitochondrial Disease Foundation (UMDF)'s Mitochondrial Medicine Conference brings together the best minds in mitochondrial medicine and gives patients and families the opportunity to meet some of the top clinical mitochondrial specialists from around the world. With over 700 attendees representing almost every state in the U.S. and more than 15 different […]
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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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Questions, Answered: Genetic Counselling & Autoinflammatory Diseases
Have you ever wondered what genetics counselling is, and how it works? As part of its new Questions, Answered series, the Canadian Autoinflammatory Network - Réseau Autoinflammatoire Canadien has invited Montreal Clinical Research Institute's genetic counsellors Valérie Poulin and Géraldine Gosse to teach autoinflammatory patients about genetics counselling and autoinflammatory diseases. During the presentation, Valérie and Géraldine will present […]
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Webinar: Rare Barometer survey on the impact of rare diseases on everyday life
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 […]
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