Canadian Government Establishes Advisory Group to Help Canadians Living with Rare Diseases

Rare Daily Staff

In Canada, one out of twelve people—many of whom are children—has a rare disease. There are thousands of different rare diseases that affect patients, their families and caregivers across the country. Unfortunately, treatments are available for only a small percentage of these conditions.

In March 2023, the Government of Canada announced measures in support of the first-ever National Strategy for Drugs for Rare Diseases, with an investment of up to $1.5 billion over three years. Through this, the Government will help increase access to, and affordability of, effective drugs for rare diseases to improve the health of patients across Canada, including children.

Now, as a next step in advancing the National Strategy, the Government of Canada has created the Implementation Advisory Group (IAG) for drugs for rare diseases. Over the next three years, the IAG will provide a forum for patients and stakeholders to provide patient-centered advice and exchange rare diseases-related information as well as best practices that will inform the implementation of the National Strategy.

The IAG includes approximately 20 members from across the rare disease community, including those with lived experience, and those who provide or who work to improve care for patients, such as clinicians, the pharmaceutical industry and researchers. Their first meeting took place on October 26, 2023.

“Access and affordability should never be barriers to care. Since consultations on a drugs for rare disease strategy began in 2021, we’ve heard from patients and families with lived experience as well as from stakeholders that a stronger patient-centered approach is needed to ensure Canadians living with rare diseases could access the drugs they need, regardless of where they live, said Minister of Health Mark Holland. The Advisory Group is an important part of our efforts to make sure patients have their say in improving access to effective treatments and services for patients living with rare diseases.”

Photo: Canadian Minister of Health Mark Holland