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.
Prof. Dr. Annemieke Aartsma-Rus is a professor of Translational Genetics at the Department of Human Genetics of the Leiden University Medical Center (LUMC, the Netherlands). She played an important role in the development of antisense mediated exon skipping for Duchenne muscular dystrophy during her PhD research (2000-2004) at the LUMC. Her work currently focuses on […]
The realm of perinatal child health research is undergoing a rapid transformation. To enhance the well-being of our children and families, it is imperative to foster collaborative research endeavors, facilitate data sharing, provide training, and encourage networking among researchers and institutions. Consequently, nine networks have united their annual meetings to facilitate connections and eliminate obstacles […]
Muscular Dystrophy Canada (MDC) is pleased to present a webinar on the neonatal Fc receptor (FcRn) pathway for people with generalized Myasthenia Gravis (gMG). MDC is excited to have their webinar speaker discuss next generation treatments for Myasthenia Gravis and help us understand how these treatments work in the neuromuscular pathway.
This case-based rounds webinar is for Canadian clinicians, academics, and trainees with an interest in neuromuscular disease. NMD4C and MDC are providing organizational and technical support. This is a an independent clinical/academic webinar with no industry sponsorship or influence.
Are you a researcher seeking data from Canada’s largest population study – the Canadian Partnership for Tomorrow’s Health (CanPath)? HDRN Canada’s Data Access Support Hub (DASH) offers coordinated services to researchers interested in accessing administrative health data from more than one province or territory in Canada. Learn about the innovative partnership between CanPath and HDRN […]
Oriana Ciani is an Associate Professor of Practice in the Public Management and Policy, Health Economics, and HTA (Health Technology Assessment) Area at SDA Bocconi School of Management. Her collaboration with SDA began in 2010. She coordinates the Epidemiology and Public Health module in the “Master of International Health Care Management, Economics and Politics” (MIHMEP) […]
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 […]
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