Arthritis Consumer Experts (ACE), in partnership with Lupus Canada, has launched the National Lupus Survey to learn directly from people living with lupus about their care experiences, challenges, and unmet needs.
Your voice matters. By sharing your lived experience, you will help shape education resources, programs, and advocacy efforts that reflect the real-world needs of people living with lupus.
Why this Survey matters
Lupus is a complex, chronic autoimmune disease that can affect virtually any part of the body. It is often misunderstood, difficult to diagnose, and challenging to manage. Many people living with lupus report:
- Long delays in diagnosis
- Limited access to specialists or culturally appropriate care
- Barriers to effective treatment
What the Survey covers
The survey asks about:
- Diagnosis and treatment journey
- Access to care and medications
- Physical, mental, and sexual health
- Impact on work and daily life
- Experiences with health equity
- Caregiver experiences and supports
It will take about 15 minutes to complete. All responses are anonymous and confidential. The survey will remain open until October 31, 2025.
Help us spread the word
If you or someone you know lives with lupus, please share this survey link. The more voices we hear, the stronger our impact will be.
If you are an arthritis health care provider, please help us spread the word about the Survey by downloading the PDF poster and placing it in your patient waiting area.
Thank you
Thank you for being part of this important work to improve lupus care across Canada.
This project is led by Arthritis Consumer Experts in partnership with Lupus Canada. For questions about the survey, please contact us at feedback@jointhealth.org.