Takeda Releases Report on the Importance of Defining Rare Disease in Canada

Takeda Canada released a report that highlights the need to develop a single, pan-Canadian definition of a rare disease to help accelerate and support the launch of Canada’s Rare Disease strategy.

Photo: Durhane Wong-Rieger, president and CEO at Canadian Organization for Rare Disorders.

The report, Defining Rare Disease in Canada: Lessons from G20 Nations, highlights the fact that Canada remains one of a few G20 nations that lack a public and consistent definition of rare disease.

“Takeda applauds the government of Canada’s commitments to developing a national rare disease strategy to support patients and families living with a rare diseases,” says Rute Fernandes, General Manager, Canada. “The need for a clear definition will enable focus on the necessary infrastructure required to improve time to diagnosis, time to access treatment and patient care.”

Takeda analyzed the different approaches taken by other G20 countries. It argued that defining what is a rare disease, is a critical early step in formulating policies and funding frameworks for patients with a rare disease.

The majority of Canada’s G20 peers have adopted a quantitative definition: fewer than 1 patient per 2,000 people. Other approaches involve qualitative definitions built around criteria like “medical need” and prescriptive definitions that call out designated diseases or disease groups. The report said that with quantitative-only definitions susceptible to becoming blunt, rigid, or static, some countries have adopted blended definitions that combine quantitative and qualitative elements.                            

“It is very important that Canadian decision and policy makers are guided by consistency in the designation of rare disease, recognizing the challenges due to rarity of a condition which may also be severe, progressive, and life-threatened, and lacking understanding, limited research, and few or no effective treatments,” said Durhane Wong-Rieger, president and CEO at Canadian Organization for Rare Disorders.

Author: Rare Daily Staff