Today, on Parliament Hill, the Canadian Organization for Rare Disorders (CORD) released Canada's Rare Disease Strategy and called upon the federal, provincial and territorial governments along researchers, healthcare providers, educators, employers, and the patient community to join forces to make the Strategy a reality.
"We cannot continue to treat rare diseases one at a time, says CORD President Durhane Wong-Rieger. With more than 7,000 rare diseases, Canada needs a comprehensive approach. 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."
The Strategy, prepared by CORD with experts from every sector 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 specific rare disease affects only a small number of individuals, scientific understanding and clinical 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.
"Growing up with a rare condition can be very isolating," says Kate White of Ottawa who has Gaucher disease, as does her sister Meghan. "My sister and I were able to support each other. A national strategy will provide a life-line connecting patients with the right healthcare professionals and also each other."
"We need to take the same co-ordinated approach to rare disorders as is currently being done for cancer, mental illness and other conditions," says Ms. Wong-Rieger. "Globally, more than 35 nations have or are developing rare disease strategies. Canada has a world-leading health care system but we need to act strategically to make it work for patients with rare diseases."
Canada's Rare Disease Strategy makes it clear that now is the time for governments and others to take action to take advantage of the many advances in research and technology especially in genetic science. About 80% of rare diseases have a genetic origin and some of the leading researchers and clinicians are right here in Canada.
"There is no question that elements of the strategy such as a Rare Disease Centre of Excellence, for example will help to co-ordinate our initiatives and focus our resources," says Dr. Alex MacKenzie, who with Dr. Kym Boycott leads the internationally renowned "Care4Rare" project at the Children's Hospital of Eastern Ontario (CHEO). "This will absolutely lead to an increase in rare disease research and clinical activities to the ultimate benefit of this under-served and vulnerable community."
Canada's Rare Disease Strategy which was adopted after extensive national consultations with patients, governments, public and private sector groups has five main action goals. These are:
- Improving early detection and prevention,
- Providing timely, equitable and evidence-informed care,
- Enhancing community support,
- Providing sustainable access to promising therapies and
- Promoting innovative research.
Canadians can read the strategy and voice support for governments and others to take action by signing an on-line declaration on the CORD website at: www.raredisorders.ca.
"Now is the time for all political parties to make a strategy for rare diseases part of their health policy platforms," says Ms. Wong-Rieger. "And because rare diseases are a public health issue that affects everyone, we want all Canadians to join in the dialogue. We will be hosting national forums through social media and travelling across the country to talk to Canadians about the opportunities in the Strategy to improve health care for all and attract new research and investment opportunities.
Canadian Organization for Rare Disorders