The Canadian Organization for Rare Disorders (CORD) has released Canada’s Rare Disease Strategy, developed with experts from every sector. The Strategy details the extraordinary burden faced by Canadian families with rare illnesses. Challenges include misdiagnosis, unnecessary surgeries, social isolation, financial hardship, lack of treatment options and early death. These are the same challenges faced by Canadians with “non-rare” conditions, but the impact is often much more severe. The Strategy proposes a five-point action plan that will address unnecessary delays in testing, wrong diagnoses and missed opportunities to treat.
Take action by signing our online petition here.
To learn more about the strategy visit OUR WORK section on the website.
June 14, 2017
Delta Hotel Toronto, 75 Lower Simcoe Street
Roadmap to Optimal Drug Access Amendments to Patented Medicines Regulations and Ontario Kids’ Pharmacare (OHIP+)DRAFT AGENDA WHAT WE WANT TO ACHIEVE Outcome: Each stakeholder to be able to provide meaningful input on Amendments to Patented Medicines Regulations benefitting from perspectives of others To that end Share expertise, knowledge, and evidence Exchange needs, interests, and concerns Deliberate toward common positions Recognize unique views In the end Expand mandate from simplistic singular focus of “protecting Canadians from excessive drug prices” to realistic collective goal of “ensuring all Canadians have access to best possible medicines at prices that are affordable today and invest in tomorrow.” * To receive member rates you must login at the top right hand corner of raredisorders.ca Refund Policy: Cancellations received a minimum of 15 days prior to the event will receive a refund minus an administrative fee of $15.00. This fee covers the cost of processing the registration and refund. Cancellations received after the 15-day deadline and no-shows are non-refundable.