Category: Non classifié(e)

At a meeting of the Trustees in February 2019, the application from Action Contre les spondylarthrites (ACS), a second association in France.

ACS was founded in 1987 and has 3,500 members.  They organise many activities and publications and work at raising awareness.

ACS organise the Journée Nationale de Spondyloarthrites or National Sponyloarthritis Day.  This year it will be in Paris on 23 March.

ACS are keen to expand on work already started working with other french-speaking countries to share publications, booklets and videos.

ASIF looks forward to working with ACS.

At a meeting of the Trustees in January 2019, the application from INBAR, Israel was approved.

INBAR is the Israeli Association for patients suffering fro rheumatic, autoimmunie and inflammatory diseases. It was founded in 1985 and in recent years has increased the number of activities related to AS. They work hard to raise awareness among the medical professions and patients.

We look forward to working with INBAR.

In November the Trustees approved the application from the Ankylosing Spondylitis Organization of Ukraine ASOU “Ankylosis.net”

This is a very new organisation set up by Irina Bublik and her colleagues and formalised only in July 2018.

Irina was diagnosed 8 years ago. She is a Pilates teacher and has studied the effects of exercise in rehabilitation for AxSpA patients.

We look forward to working with Irina, and her colleagues at ASOU.

ASAS has for some years referred to our group of diseases or conditions as Axial Spondyloarthritis. Many think that the term Axial Spondyloarthritis is more inclusive and covers the full range of people suffering with related conditions.

There is some debate now as to whether ASIF, as an umbrella organisation, should consider changing its name to Axial Spondyloarthritis International Federation. Luckily for us, that means the acronym ASIF would remain the same.

The Netherlands have already made the change to Stichting Axiale SpA Nederland and we know that other patient associations eg NASS are considering making the change.

This also applies to World AS Day – should it be World Ankylosing Spondylitis Day or World Axial Spondyloarthritis Day? Again, the logo would remain the same – World AS Day.

This is one of the issues that we are going to discuss at the ASIF Annual General Meeting which this year will take place in Madrid (during EULAR) on 12 June 2019.

If you have any thoughts about this, please email Jo at office@asif.info