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rare disease day 2024: cord announces launch of canadian rare disease network

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.

durhane wong-rieger is the president and ceo of the canadian organization for rare disorders. supplied
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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“we had hoped that this february 29th rare disease day 2024 would have been a full-throttled celebration with a canadian rare disease network to support the roll-out of the funding from the canadian rare disease drug strategy,” durhane wong-rieger, president and ceo of cord, said in the release.
“we are thrilled and congratulate everyone involved in working to create the new crdn which will play a huge role in helping patients access better diagnosis, care and treatments for rare disorders while also promoting research and greater clinical collaboration across canada.”
wong-rieger emphasizes the urgency of fulfilling funding promises, advocating for swift action to provide patients with the treatments they desperately need. cord has put forward an actionable plan to immediately offer health canada-approved and value-assessed rare disease therapies, alongside a framework for ongoing monitoring and evaluation.
highlighting the paradox, wong-rieger pointed out that canada was the pioneer in approving two novel rare disease therapies, yet patients remain deprived of access due to funding shortfalls. she calls on the federal government to honor its commitments, citing previous successful collaborations with provinces as a model for immediate action.

“we know exactly which drugs are languishing in bureaucracy while patients wait, and they are often ones that have already gone through health technology assessments and the pan-canadian pharmaceutical alliance to establish favourable funding terms,” wong-rieger added. “the federal government has shared funding responsibility in the past with provinces, such as the case for fabry’s disease nearly twenty years ago. this is not rocket science – this is simply doing what you promised to do.”

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in conjunction with rare disease day 2024, cord is hosting a summit in ottawa on february 28 and 29, culminating in a march to parliament hill to advocate for the release of the committed funds and access to essential treatments for canadians living with rare diseases.
andrew robichaud
andrew robichaud

andrew robichaud is the executive producer at healthing.ca, bringing over a decade of diverse journalistic and product management experience to the team. he is dedicated to telling compelling health stories that matter – from patients and caregivers, to the latest research and actionable information to improve health outcomes.

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