• Are Patient Perspectives Heard Yet?
• What have we been up to?
• Get Involved!
• Useful Resources

Are Patient Perspectives Heard Yet?

As a grassroots, patient-driven organization, CAPA has benefited immensely from the leadership and dedication of our long-time Vice-President, Dawn Richards, who stepped down from her role in late 2025. As a parting gift to the arthritis community—and a reflection on more than 20 years of engagement — Dawn wrote a thoughtful blog post titled

“Are Patient Perspectives Heard Yet? Personal Reflections over 20 Years.” 

What have we been up to?

CAPA works to ensure that people living with arthritis have a strong, visible voice in decisions that affect them. We have shared patient perspectives on the following:

• the official launch of the health data stewardship framework by the Canadian Institute of Health Information, and
• anifrolumab (self-injectable for systemic lupus erythematosus in partnership with Lupus Ontario 
• to support the re-introduction of legislation about the interoperability of health information technology.

You can also read past policy submissions on the CAPA website.

Beginning in 2025, CAPA established the Francophone Education and Resources Support Advisory Committee, made up of five French-speaking individuals living with arthritis. Together, the committee developed a community-driven action plan to strengthen education, resources and care for Francophone Canadians affected by arthritis. 

Explore the infographic on our website for a visual summary of this work and its key priorities.

We’re pleased to share CAPA’s 2026 Strategic Plan alongside our 2025 Impact Report, highlighting where we’re headed and the progress we’ve made together. These documents reflect the voices, priorities, and efforts of our community.

We welcome your feedback and ideas. If you’d like to share your thoughts, please reach out to Laurie Proulx, CAPA’s Managing Director, by email.

CAPA Board Member, Jenny Lorca, is featured in an episode of Action on Pain, where they have a thoughtful conversation on living with chronic pain. Jenny shares their personal journey and reflects on the importance of community support, peer connection, and integrating lived and living experience into research, policy, and education.

We’re pleased to highlight Lene Andersen, who contributed as a patient partner to a recent research study on biosimilars. Drawing on her lived experience, Lene helped ensure that patient perspectives were meaningfully integrated into the research process—strengthening its relevance for people living with arthritis. Read the publication here!

Get Involved

Researchers with the Inclusive Design for Employment Access (IDEA) program at the Institute for Work & Health are looking to speak with young adults with episodic disabilities (such as juvenile arthritis, IBD, depression, or anxiety) to take part in a study on transitions to work and career development. Participants will complete three interviews over 24 months and receive $100 per interview. Learn more and find out how to participate on the IDEA project website.

We’ve made major updates to the Life Hacks and Assistive Devices section of our website, sharing practical tools, products, and tips to support daily life with arthritis. Have a product suggestion, a life hack to share, or an idea for a partnership? We’d love to hear from you—please contact CAPA’s Managing Director directly to share your ideas.

Help shape 2S/LGBTQQIA+ pain research in Canada! Share your chronic pain experience through an anonymous survey. Your input will inform the co-development of research questions that reflect community needs. Learn more & participate by visiting the SHAPE Plus Pain website.

Useful Resources

Health Canada has published a resource on accessing cannabis for medical purposes, including information on eligibility, authorization, production options, and patient rights. This evidence-based guidance can help people better understand how medical cannabis is regulated and accessed in Canada. Learn more by visiting Health Canada’s medical cannabis information page.

We’ve launched a new Vaccines section on our website to support people living with arthritis in making informed decisions about vaccination. This section includes three new resources co-developed with the Canadian Immunocompromised Advocacy Network, bringing together trusted information and lived experience.