CureDuchenne FUTURES National Conference
JW Marriott Orlando Orlando, FL, United StatesThe CureDuchenne FUTURES National Conference is an annual event focused on bringing education, connection, and hope to the entire Duchenne community.
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.
The CureDuchenne FUTURES National Conference is an annual event focused on bringing education, connection, and hope to the entire Duchenne community.
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 […]
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 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)
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.
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 […]
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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