CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.
1 in 12 Canadians has a rare disorder. Many others are affected or at risk but remain undiagnosed and unaware. CORD provides information to individuals, and links to other rare disorder support groups and organizations from Prince Rupert, British Columbia to St. John’s, Newfoundland.
CORD represents the orphan disorders community in the development of Canadian Orphan Drug Policy, including the proposed Expensive Drugs for Rare Disorders program within the National Pharmaceutical Strategy CORD is working to promote state-of-the-art Newborn Screening in all provinces and territories. CORD is working to ensure Canada’s Clinical Trials Registry works effectively for those with rare disorders. CORD is committed to increasing access to genetic screening and genetic counselling for all rare disorders.
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.
Right now, only 60% of treatments for rare disorders make it into Canada and most get approved up to six years later than in the USA and Europe. People with rare disorders in Canada are missing out on treatments that could save or significantly improve their lives. This needs to change.
About 80% of rare diseases are caused by genetic changes. 25% of children with a rare disease will not live to see their 10th birthday.
A rare disease is a condition affecting fewer than 1 person in 2000 in their lifetime. There are over 7000 known rare diseases and dozens more being discovered each year so in total, 1 in 12 Canadians will be affected by a rare disease.
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.
(French version of the full strategy document will be available soon)
Take action by signing our online petition here.