“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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