The Spondylitis Association of America (SAA) is the patient organisation in the USA for people like me. Its vision is of “a world free from the pain and disability of ankylosing spondylitis and related diseases.” and its mission is:
To be a leader in the quest to cure ankylosing spondylitis and related diseases, and to empower those affected to live their lives to the fullest.
It provides great information about ongoing research, and advice from medical doctors, researchers, dieticians, physiotherapists, and more. Currently I find it the best source of the latest information for patients and carers affected by Spondyloarthritis.
So imagine my delight when I was offered the opportunity to present at the March 2023 SAA Storytellers event. Together with four other patients we shared our experiences with the Spondylitis community in the USA and many others worldwide. The whole event is on YouTube. If you want to jump to my presentation, it starts at 12:22.
Patients need carefully checked and up to date information. Especially now, as healthcare systems struggle in the aftermath of the Covid-19 pandemic, which has put a big strain on healthcare services. I believe that self-management, shared decision-making and advocating for our own needs will be essential components of effective healthcare in the future. The screen shot below gives you an idea of the wealth of resources which the organisation offers.
The RheumaCura foundation, of which I am a co-founder, aspires to a similar vision and wants to bring that focus on patient-centred research to Switzerland. We work to:
- Raise awareness about the need for and value of patient-focused research in rheumatic disorders
- Ensure a strong patient voice in research into rheumatic disorders
- Influence the research agenda in the interest of people with rheumatic disorders.
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.