The Spondylitis Association of America (SAA) is the patient organization in the US for people like me. Its vision is “a world free from pain and disability due to ankylosing spondylitis and related diseases,” and its mission is:
To take a leading role in the search for a cure for ankylosing spondylitis and related diseases and to empower those affected to live their lives to the fullest.
It offers excellent information on ongoing research as well as advice from doctors, researchers, nutritionists, physical therapists, and more. Currently, I consider it the best source for up-to-date information for patients and caregivers affected by spondyloarthritis.
So imagine my delight when I was offered the opportunity to speak at the SAA Storytellers event in March 2023. Together with four other patients, we shared our experiences with the spondylitis community in the US and many others worldwide. The entire event can be found on YouTube. If you want to jump directly to my presentation: it starts at 12:22.
Patients need carefully vetted and up-to-date information. Especially now, as healthcare systems struggle with the aftermath of the Covid-19 pandemic, which has heavily burdened health services. I believe that self-management, shared decision-making, and advocating for one’s own needs will be essential components of effective healthcare in the future. The screenshot below gives you an impression of the wealth of resources the organization offers.
The RheumaCura Foundation pursues a similar vision and aims to bring this focus on patient-centered research to Switzerland. We are working on:
- raise awareness of the need and value of patient-centered research in rheumatic diseases
- ensure a strong patient voice in rheumatic disease research
- influence the research agenda in the interest of people with rheumatic diseases.
With SAA we have great role model of how to empower and inform patients. To follow RheumaCura’s work in Switzerland, subscribe to our newsletter on our website, or follow us on LinkedIn
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