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Use #hopeinmotionlife to share how you triumph over AS or SpA (or other adversity) with a photo that you feel describes it well. There are no small victories; don’t hesitate to share the moments that show how you keep enjoying life! Whether sitting at a table with friends or gardening with your grandchildren or climbing a mountain #hopeinmotionlife is a conversation about sharing courage and happiness in the face of adversity.
We’ve started a Facebook page to connect with other people affected by SpA. It’s been a great tool to connect with other groups and associations as well. Our page is used to post quick updates about the journey and a space used for exchanging inspiration, support, and compassion. We encourage everyone to leave a comment, like the page, what ever you do, join the conversation!
We would like to showcase inspiring stories about people from around the world living with SpA. And even if it’s not just SpA. If you or someone you know would like to have a story written and a portrait taken to be featured on the website we are looking at the #hopeinmotionlife conversation on Instagram as well as looking to meet people in person so don’t hesitate to contact us.
These are some great places to get started.
Merck Manual — this is a more technical site.
The Costs of Treatment – a study looking into the costs of Anti-tnf treatments.
Canadian Spondylitis Association – Great website with useful technical information that is easy to digest. They have groups that you can participate in, depending on your region and if you speak English or French.
Spondylitis Association of America – One of their main focuses is on building community. Great website with lots of infos, educational videos.
ACS France – A great team of proactive people working to bring together people and create positive change for people affected by SpA. They have groups that you can participate in, depending on your region. They also organize once a year a National Encounter about Spondyloarthritis in France.
National Ankylosing Spondylitis Society (NASS) -the only UK registered charity dedicated to AS. Their very well done website provides great informations and support to people with AS. Great resources for patients.
Ankylosing Spondylitis Association of Ireland – They’ve developed some great pdfs and an application; tools that have helped us when it comes to ideas about self-care.
Assessment of SpondyloArthritis International Society – group of expert in the field of Spondyloarthritis, great tool for all scientific aspect and research publications.
The European League Against Rheumatism EULAR – is the organisation which represents the people with arthritis/rheumatism, health professional and scientific societies of rheumatology of all the European nations. national organisations of people with arthritis/rheumatism across Europe work together via the EULAR Standing Committee of PARE
This AS life – is a website dedicated to ankylosing spondylitis patients. Set up to help those living with this chronic illness.
Walk AS One – mobilizes and motivates a global community to raise awareness and address the challenges of everyone affected by Ankylosing Spondylitis and its family of related diseases.
La Clefs de Dos – a unique pare-led video program to improve coping skills of people living with axial spondyloarthritis.
Ne lui tournez pas le dos – Campaign to raise awareness about SpA and promote early diagnose
Face your back pain – Website to raise awareness about SpA and promote early diagnose
The reality of Spa – Website to raise awareness about SpA and promote early diagnose
Reach The Top – an association created to raise money to fund research for Ankylosing Spondylitis. The objective of Romain, athlete who has this pathology, is to climb the highest peaks around the world.
IMMAKAYAK – Incredible! 3 guys (1 affected by Ankylosing Spondylitis) who are going to kayak 400km in the middle of Icebergs in Greenland. Raising funds for the Spondyloarthritis association ACS-France.
Walk AS One – mobilizes and motivates a global community to raise awareness and address the challenges of everyone affected by Ankylosing Spondylitis and its family of related diseases.
Walk your A.S. off – every step counts! Be part of a global an awareness campaign attempting to raise the level of knowledge and understanding of Ankylosing Spondylitis
Valérie atteinte de spondylarthropathie qui aime rêver et va aller courir au Sénégal et aussi déléguée régionale pour ACS Bretagne.
Being Charis – advocate, writer, inspiring voice
Carrie expat living in Taiwan living with AS – advocate, writer, inspiring voice
The Mighty – We publish real stories by real people facing real challenges.
Valérie atteinte de spondylarthropathie qui aime rêver et va aller courir au Sénégal et aussi déléguée régionale pour ACS Bretagne.