Canadian Organization for Rare Disorders (CORD) is calling for nation-wide action to combat and prevent rare forms of illness.
On Monday, CORD released Canada’s first Rare Disease Strategy (CRDS) and is now requesting assistance at the federal and provincial level, as well as from healthcare providers and researchers, to help successfully implement the plan.
Approximately one in 12 Canadians, two-thirds of whom are children, are affected by a rare disorder. However, considering each specific rare disease affects only a small number of individuals, the scientific research and resources dedicated to understanding a specific disease is fragmented.
In light of this issue, CORD created a five-point action plan that will address unnecessary delays in testing, wrong diagnoses, and missed opportunities to provide treatment:
- 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.
“We cannot continue to treat rare diseases one at a time, said 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.”‘