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.
Date: November 6-7, 2017 Location: Hyatt Regency Toronto, 370 King St W Registration Objectives of Conference Create a shared understanding of the patient journey and what “good” looks like Mobilize all stakeholders around common vision for Rare Disease Canada Create a guiding framework to map current resources, define gaps, identify opportunities and challenges, and prioritize needs Draft Agenda Special group discounted room rate $210 before October 4, 2017 Hotel Booking: https://aws.passkey.com/e/49287903 CORD is offering travel bursaries to patient group representatives to help offset the cost of travel. Application: https://www.surveymonkey.com/r/2017cordfallconf