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.
As part of the first-ever National Strategy for Drugs for Rare Diseases announced in March 2023, the Government of Canada committed to establishing a national governance structure to support the implementation of the National Strategy and to help improve consistent access and affordability of effective drugs for rare diseases across the country.
Today, as a next step in advancing this strategy, the Honourable Mark Holland, Minister of Health, announced the creation of 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-centred advice and exchange rare diseases-related information as well as best practices that will inform the implementation of the National Strategy.
