the canadian organization for rare disorders (cord) is celebrating rare disease day with the groundbreaking launch of the canadian rare disease network (crdn), the organization announced in a press release on feb. 29. the crdn marks a significant achievement, turning cord’s strategic vision outlined in 2015 into a collaborative reality. this network will bring together patient groups, healthcare professionals, and researchers with a goal to advance care and support for the one in 12 canadians and their families affected by rare disorders, particularly noting that children represent two-thirds of this demographic.
at the core of crdn’s mission is the commitment to patient-centric care, focusing on the missing links in treatment, innovation, and research for rare diseases. the network aims to ensure improved access to diagnostic services, care, and treatments, to unlock better outcomes for patients and their families. furthermore, it pledges to enhance data collection efforts to strengthen future strategies.
however, the launch of crdn is shadowed by growing frustration over delays in the release of federal funds earmarked for a larger rare disease commitment. despite a 2019 promise and a subsequent announcement in march 2023 of a $1.4-billion rare disease strategy, including $100 million for federal drug plans and related initiatives, patients are yet to see the benefits, leaving a pressing need for new treatments unmet.
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