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 […]
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 Dr. Aneal Khan to learn about the genetic basis of porphyria and the implications of new advancements in genetics for the diagnosis and treatment of rare diseases like porphyria!
Muscular Dystrophy Canada (MDC) is pleased to present a webinar on corticosteroids and how and why they are used in people diagnosed with neuromuscular disorders.
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 Summit is an international conference set to highlight cutting-edge science at the crossroads of brain and heart health, showcasing innovation and state-of-the art research. Learn from international experts, leaders within the Brain-Heart Interconnectome and the next generation of researchers working in brain and heart health. The event will take place June 12-14, 2024 at the […]
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 […]
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.
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 […]
Held each year in June, the HTAi Annual Meeting is a key international gathering for sharing cutting-edge research, advancing discussions in policy and methods, and building global networks. Throughout the 5-day conference, attendees to interact with colleagues from different countries, exchange ideas and expertise, reconnect with old friends and grow new collaborations and supportive and […]
Part 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 […]
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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