Government of Canada establishes Advisory Group to help Canadians living with rare diseases
The government has launched an Implementation Advisory Group (IAG) on drugs for rare diseases. 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 to inform the implementation of the National Strategy.
News release
October 30, 2023 | Ottawa, Ontario | Health Canada
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.
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. More information on the IAG members can be found here.
This announcement marks the continuation of critical dialogue between patients, their families and caregivers, and stakeholders in the development and implementation of the National Strategy so people living with rare diseases can have better health outcomes and access to treatment options.
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By
Government of Canada- Health Canada
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Published
Nov 30, 2023
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Subject Area
- General Health and Wellness
- Mental Health and Wellness
- Information, Referral, & Advocacy
- Non-profit / Charitable sector
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Audience
- Government
- Health Authorities
- Caregivers, Seniors & Volunteers
- Service Providers (Non-profits, Community Organizations, Local government)
- Government (Politicians, Policy Makers) and Health Authorities
- Funders
- Academics
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Category
- Advocacy
- Best Practices
- Policy, Planning, & Procedures
- Advisory Committees/Reference Groups
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