tired of fighting mostly on our own, the rare disease community, inclusive of patients and healthcare providers and under the leadership of the canadian organization of rare disorders (cord), has developed solutions to timely diagnosis, care and treatment.
in 2015, cord released canada’s rare disease strategy, which proposed a five-point plan aimed at addressing unnecessary delays in testing, wrong diagnoses, and missed opportunities to treat. this strategy continues to be the roadmap for what needs to be done across all stakeholders and lays the groundwork for much of the recent momentum created by the announcement of a rare disease drug strategy.
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we now have a once-in-a-lifetime opportunity to build on this growing momentum to implement a coordinated pan-canadian strategy, so that every canadian, no matter where they live, can live his or her best life.
it’s time for provincial and territorial governments to step up and add both their perspectives and contributions to the proposed framework to bring into reality a canadian rare disease infrastructure. this will ensure the optimal efficiency and cost-effectiveness of a canadian rare disease drug program.
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