Canada cannot continue to treat rare diseases one at a time.  With more than 7,000 rare diseases, Canada needs a comprehensive approach.

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.

About 1 in 12 Canadians, two-thirds of them children, are affected by a rare disorder. But because each disease affects only a small number of individuals, understanding and expertise may be limited and fragmented across the country. The Strategy proposes a five-point action plan that will address unnecessary delays in testing, wrong diagnoses and missed opportunities to treat.

These are:

1. Improving early detection and prevention,

2. Providing timely, equitable and evidence-informed care,

3. Enhancing community support,

4. Providing sustainable access to promising therapies and

5. Promoting innovative research.

CORD calls upon the federal, provincial and territorial governments along with researchers, healthcare providers, educators, employers, and the patient community to join forces to make Canada's Rare Disease Strategy a reality.

CORD also calls for the immediate implementation of Health Canada’s Orphan Drug Regulatory Framework to support Canadians’ access to new drugs for rare diseases.

Together, we can ensure the nearly 3 million Canadians living with rare disorders have the same access to treatment and support as those with more common illnesses.”

Please visit our website to download the full strategy at raredisorders.ca