CORD proposes action plan for rare diseases

Canada needs a national action plan to deal with rare diseases, says a health-advocacy group.

The Canadian Organization for Rare Disorders (CORD) has released a five-goal strategy to improve health care for those who suffer from rare conditions.

“While each rare disease affects only a small number of individuals, there are more than 7,000 rare diseases that together affect one in 12, or nearly 3 million Canadians,” the group said in a news release. “However, awareness, knowledge and treatment of most of these diseases are still limited and fragmented across the country. As a result, individuals face a host of extraordinary challenges.”

For example, drugs and treatments are often not readily available or covered under provincial health insurance. And it can be very difficult to find doctors who specialize in rare illnesses.

CORD says Canada should adapt a national approach to newborn screening and other early detection services, fund better research, make its drug approval process more efficient and link health care administrative databases across the country “to support health service delivery to patients with rare diseases.”

“Our shared success will be celebrated when policymakers from all levels of government and the rare disease community can point to specific initiatives that have improved the lives of Canadians affected by these diseases,” CORD said.