News related to rare disease, including patient stories, new programs and initiatives, and more.
A recent study published in Science has identified crucial genetic mutations in the TRiC chaperonin complex linked to severe brain malformations, offering new diagnostic and treatment possibilities for rare disease patients worldwide, with 22 individuals diagnosed so far through international collaboration led by Dr. Hanns Lochmüller.
CRDN invites the rare disease community to take part in a survey to share feedback on our draft strategic plan, helping us ensure it meets the needs of the entire community.
The Patient and Community Engagement Research (PaCER) program is launching its January 2025 cohort, focusing on how rare diseases impact families. This unique, fully sponsored opportunity invites parents from across Canada to collaborate and share their experiences.
Led by Dr. Carl Ernst and a collaborative team from The Neuro, Montreal General, Montreal Children’s Hospital, and McGill University, the project will compare various gene therapy delivery methods for safety and effectiveness to overcome existing treatment barriers.
University of Calgary researchers have developed a groundbreaking computer program that uses 3D facial imaging and machine learning to identify genetic diseases in children, helping children and their families receive faster diagnoses and more timely treatment plans.
CRDN, alongside MICYRN and RareKids-CAN, will support the newly launched European Rare Diseases Research Alliance (EDERA), ensuring that Canada’s rare disease landscape is aligned with international efforts.
Stay updated with the latest developments and events from the CRDN as we advance rare disease research and care across Canada.
CRDN invites the rare disease community to take part in a survey to share feedback on our draft strategic plan, helping us ensure it meets the needs of the entire community.
The Patient and Community Engagement Research (PaCER) program is launching its January 2025 cohort, focusing on how rare diseases impact families. This unique, fully sponsored opportunity invites parents from across Canada to collaborate and share their experiences.
CRDN, alongside MICYRN and RareKids-CAN, will support the newly launched European Rare Diseases Research Alliance (EDERA), ensuring that Canada’s rare disease landscape is aligned with international efforts.
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