J. Erlendsson^1
1President, Ankylosing Spondylitis International Federation, Horsens, Denmark

Abstract: Ankylosing Spondylitis International Federation, ASIF, has served as an umbrella organisation for national and regional patient Ankylosing Spondylitis societies since 1988. Of 32 AS-societies in 26 countries worldwide, presently 29 are members of ASIF, representing more than 52,000 patient members. ASIF is run on a voluntary basis with no paid staff.
The main aims of ASIF are:
1. To act as a central body for national AS societies.
2. To stimulate and assist in the formation of national AS societies.
3. To assist individual patients in countries where there is no AS society.
4. To exchange information and experiences among member countries.
5. To encourage development of and participation in international research programmes thereby giving a forum for cooperation with doctors and other health professionals.
6. To seek cooperation with other arthritis organisations.
7. To increase the public awareness of AS.
In order to meet our aims nos. 1 – 4 we have the following tools:
A) Our website www.spondylitis-international.org supplemented with a comprehensive overview of all national AS societies published yearly. These enable us to have a complete picture of the organisation and also serve as an inspiration for our work.
B) Every second or third year a council meeting takes place where views are exchanged relating to disease treatment, overcoming problems associated with the condition etc.
C) Twice a year ASIF NEWS is distributed by email. The top stories include summaries in layman’s terms of contributions to e.g. EULAR and other rheumatology related congresses.
D) In 2005 our vice-president Prof. Ernst Feldtkeller and Prof. Désirée van der Heijde, president of ASAS, wrote a booklet on assessment scores, classification and diagnosis criteria of AS. It has recently been translated from German into English and will hopefully be printed soon and appear as a collaboration between ASIF and ASAS.
E) Car driving represents special problems for AS patients due to the increased risk of spinal fractures. In collaboration with Volvo Car Safety Centre in Sweden a booklet on car driving and AS has been published in Danish. It has been translated in to six different languages. Thus, it is an example of how ASIF can deal with a rather unique AS-problem, not covered by others.
To fulfil our aim No. 5 ASIF has been engaged in several scientific projects.
A questionnaire on ankylosing spondylitis and pregnancy addressed to women with AS was published in the newsletters of AS societies or sent by mail to female members in Canada, the USA and 11 European countries. 939 completed questionnaires were returned. The results were published in 1998 (1). Patient-adapted publications appeared in newsletters from the contributing AS societies. This large investigation was only made possible by the cooperation between Prof. Monika Østensen and ASIF.
Further examples: A questionnaire was published in the newsletters from the AS societies of Germany and Austria in the year 2000. 1080 AS patients responded. In these investigations, the vice-president of ASIF cooperated with many distinguished scientists resulting in 5 publications with the following topics:
Age at disease onset and diagnosis delay in HLA-B27 negative versus positive patients with AS (2). Efficacy and side effects of NSAID therapy of AS (3). The prevalence of common infections and allergic symptoms in patients with AS (4). Disease triggers of AS (5). Prevalence and annual incidence of vertebral fractures in patients with AS (6). Another investigation on vertebral fractures in patients with AS involved patients in Germany and Denmark (7).
With 52,000 patient members, ASIF contributes to and communicates knowledge about AS on an international level to patients, rheumatologists and other health personnel. One way in which we hope to achieve ASIF’s aims nos. 6 and 7 is by striving to cooperate with The Social Leagues of EULAR in their effort to build a coalition in search of stronger arthritis patient networks.
References: 1. Østensen M, Østensen H. Ankylosing Spondylitis – The Female Aspect. J Rheumatol 1998;25:120-4.
2. Feldtkeller E et al. Rheumatology International 2003;23:61-6.
3. Zochling Jane et al. Clin Rheumatol 2006;25(6):794-800.
4. Zochling Jane et al. Clin Rheumatol 2006;25(5):648-58 with corrections in Clin Rheumatol 2006;25:659.
5. Zochling Jane et al. Clin Rheumatol 2006;25(5):660-6.
6. Feldtkeller E et al. Rheumatol Int. 2006;26(3):234-9.
7. Vosse Debby et al. J Rheumatol 2004;31:1981-5.