About CORD
One in 12 Canadians has a rare disorder. Approximately, 3 million Canadians and their families face a debilitating disease that severely impacts their lives.
Vision & Mission
Who is CORD?
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.
Objectives
- Educate and raise awareness among health professionals, media, general public and policy makers about rare disorders in Canada
- Facilitate and participate in implementation of Canadian Rare Disease Drug Strategy
- Develop, support, and participate in implementation of Canadian Rare Disease Strategy/Framework
- Increase capacity of patient community to advocate and participate on behalf of rare disease
- Promote research on rare disorders in Canada
Mission
Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.
What are CORD's Priorities?
- CORD represents the rare disease community in the development of a Canadian Rare Diseases Drug Strategy in collaboration with Health Canada and other public and private decision makers.
- CORD is committed to promoting state-of-the-art Newborn Screening and increasing access to genetic testing, genomic diagnosis, and genetic counselling for all rare disease patients and families.
- CORD is committed to implementing Canada's Rare Disease Strategy which covers screening and diagnosis, access to specialists and centres of expertise, access to community support including patient organizations, timely access to the best treatment, and support for Canadian excellence in research and development, including clinical trials and new technologies.
- CORD is committed to full engagement of patients and families in all policy and decision making processes relevant to rare diseases.
80%
of rare diseases are caused by genetic changes
25%
of children with rare diseases will not live to see their 10th birdthday
1 in 12
Canadians will be affected
Only 60%
of treatments for rare disorders make it into Canada
Key Facts
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.
Strategy
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.