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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. 

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Perinatal and Child Health Research Annual Meetings

Sheraton Wall Centre Vancouver, British Columbia, Canada

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 […]

FcRn Inhibitors and Novel Options for Myasthenia Gravis

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.

Accessing Data through DASH: CanPath & HDRN Canada Partnership

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 […]

Gene Therapy Webinar Series: Episode 7 – Health technology assessment (HTA) of genetic therapies

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) […]

NORD Living Rare, Living Stronger Patient and Family Forum 2024

Hilton Universal City Los Angeles, CA, United States

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 […]

CMT Clinical Trial Readiness Summit

Loews Coronado Bay Resort San Diego, CA, United States

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 […]

Corticosteroids and Neuromuscular Disorders

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.

RARE Pride: A Queer Conversation

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 […]

Brain-Heart Interconnectome State of the Science Summit

National Arts Centre Ottawa Ottawa, Ontario, Canada

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 […]

World Congress for Rare Skin Disorders

Maison Internationale Paris, France

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 […]

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