ASIF News

Ankylosing Spondylitis International Federation

ASIF News
A newsletter distributed by eMail to the ASIF member societies
with articles offered for reproduction in the journals of ASIF member organisations

Contents of issues distributed upto now:

ASIF News No. 1 (Winter 2003)

ASIF News first edition "ASIF News" indended as a method of communication of ASIF member societies. Distribution of articles which may be printed in journals of member organisations. Invitation to contribute with own articles

ASIF update New ASIF Executive Committee elected in the ASIF Council meeting of October 2002

SVMB 25th jubilee Report on the celebration of the 25th anniversary of the Swiss ankylosing spondylitis society (Schweizerische Vereinigung Morbus Bechterew) by Seoirse Smith

Report on EULAR Congress June 2003 Report on the congress held in Lisbon, Portugal, by Ernst Feldtkeller and Jon Erlendsson, members of the ASIF Executive Committee

ASIF website updates Pages on "How to set up a new AS society?" and "How to become an ASIF member society?" recently added to ASIF website

ASIF projects Proposed ASIF initiatives which might be realized within the next years if enough members are willing to contribute

ASIF research Results of scientific studies on ankylosing spondylitis initiated and coordinated by ASIF

ASIF News No. 2 (December 2004)

Denmark is calling Announcement of the 7th ASIF Council meeting to be held in September 2005 in Sandbjerg Estate, Denmark

ASAI in Ireland launch website Website of the ankylosing spondylitis society in Ireland can be found under the address www.ankylosing-spondylitis.ie

report on EULAR congress 2004 in Berlin Short report by ASIF vice president Ernst Feldtkeller

Report on AS symposium in Bad Gastein Short report by ASIF vice president Ernst Feldtkeller

New AS society in Turkey "Ankilozan Spondilit Hasta Dernegi (Ankylosing Spondylitis Patient Association in Turkey) founded in 2003.
by Dr. Tuncay DURUÖZ, rheumatologist, assistant professor at Celal Bayar University, Manisa, President of ASHAD

Frontiers in inflammatory joint disease Report on Canadian arthritis research forum held in May 2004, by Nils Linholm, Ontario, Canada

Ankylosed spine in ancient history: “Apa Bane” The skeletton of the famous Coptic saint Apa Bane (died 356 AD) was found by archeologists with an ankylosed spine.
Report by paleologist Wolfgang Michael Pahl and ASIF vice president Ernst Feldtkeller

Therapy of ankylosing spondylitis 4000 years ago Papyrus scrolls from about 1900 B.C. found in the ruins of the Ramesseum near the entrance of the Valley of the Kings in Egypt contain rescriptions against stiffness and crookedness.
Report by ASIF vice president Ernst Feldtkeller

"Two B or not two B?" Report on the 4th International Congress on Spondyloarthropathies held in October 2004 in Gent, Belgium, by ASIF vice president Ernst Feldtkeller

Vertebral fractures in patients with ankylosing spondylitis Result of an ASIF survey carried out in two steps in 2000 and 2001. By Ernst Feldtkeller, Debby Vosse, Jon Erlendsson, Piet Geusens, and Sjef van der Linden.
Scientific publications appeared in Rheumatology International 25 (2006) 234–239 and in the Journal of Rheumatology 31 (2004) 1981–1985.

New in ASIF website New in the ASIF website are Guidebooks for patients with ankylosing spondylitis in Russian and in Hebrew language.

ASIF News No. 3 (February 2006)

Messages from ASIF president and treasurer ASIF is now registered in Denmark and has a Danish bank account. In Geat Britain this was only possible under restricting conditions, and in Ireland it was not possible at all. The new Internet address of ASIF is www.spondylitis-international.org

2005 Council meeting Report on the 7th ASIF Council meeting held in September 2005 in Sandbjerg Estate, Denmark, by ASIF vice president Ernst Feldtkeller

Nils Linholm † Nils Linholm, delegate from the AS societies in Canada and until 2002 ASIF secretary, died on January 17th, 2006 in the age of 76 years. By ASIF secretary Ken Mulholland, past president of the Ontario Spondylitis Association.

News from Belgium Belgium rheumatic groups agree to work together. Report by Coby Otter, Belgian delegate and member of the ASIF Executive Committee

News from Canada 2.5 million Canadian dollars collected for Spondyloarthritis research

Ankylosing spondylitis society in Iran Ankylosing spondylitis society in Iran founded in 1993

10 recommendations on AS treatment ASAS/EULAR recommendations for the management of ankylosing spondylitis. By ASIF president Jon Erlendsson

Survey on disease activity and treatment Results of a survey on the disease activity and treatment of ankylosing spondylitis in Germany, presented by ASIF vice president Ernst Feldtkeller at the ASIF Council meeting held in 2005 in Sandbjerg, Denmark

Neurocognitive therapy of ankylosing spondylitis A pilot study with 19 patients with ankylosing spondylitis participating, was carried out to reveal the success rate of this new therapy method. Among 15 participants who had still a zero head-to-wall distance, 11 (73%) lost their AS symptoms. Some patients treated formerly with this method are already symptom-free since 16 years. The results suggest that the central nervous system (so far neglected in rheumatic research) plays a major role in the pathogenesis of the disease. Report by ASIF vice president Ernst Feldtkeller and rheumatologist Herbert Kellner

Recent updates on ASIF website The pages containing information on AS societies worldwide now include also the newly founded AS society in Brazil and the AS section of the Association Polyarthrite in the French-speaking part of Belgium

ASIF News No. 4 (October 2006)

Prague invites ASIF delegates for 2007 For the ASIF Council meeting in September 2007 the delegates will meet in Prague and will be transported to Jáchymov spa.

Social leagues of EULAR ASIF president Jon Erlendsson describes the functions of the EULAR (European League Against Rheumatism) Social Leagues and expresses the hope that ASIF will soon become an international member besides many national member societies.

Impressions from the EULAR congress 2006 in Amsterdam Report on the annual European Congress of Rheumatologie which took place in June 2006 in Amsterdam, by Dr. Anne Gitte Loft, rheumatologist in Vejle, Denmark

Iceland – a new member of ASIF? ASIF president Jon Erlendsson visited Iceland in his family holidays and contacted representatives of the ankylosing spondylitis branch of "Gigtarfélag Islands"(Icelandic League against Rheumatism).

The Dutch "Reumapatientenbond" Cor van Drogen, member of the "Werkgroep Bechterew" within the association of patients with rheumatic diseases in the Netherlands, will investigate the possibility to renew their membership in ASIF after they were an ASIF member in the first several years after the foundation of ASIF.

Research prize for contribution to easy diagnosis of early ankylosing spondylitis Joachim Sieper and Martin Rudwaleit from Berlin were rewarded with the research prize of the German ankylosing spondylitis society for their prosal to estimate the probability of ankylosing spondylitis in a patient with chronic back pain by combining the sensitivity and specificity of test results characteristic for AS.

Goals of ankylosing spondylitis patient organisations ASIF vice president Ernst Feldtkeller was invited to present at the Turkish Congress of Rheumatology a lecture on the contributions of AS patient organisations to patient health and medical research.

ASIF News No. 5 (March 2007)

President's message Opening remarks to these ASIF News and invitation to contribute to future ASIF News with own ideas and experiences

2007 ASIF Council meeting Announcement of the ASIF Council meeting which will take place in September 2007 in Jáchymov (Czech Republic)

Fergus Rogers remembered Fergus Rogers, ASIF president from 1988 to 2002 and director of the Britisch ankylosing spondylitis society for 26 years, died on 17th November 2006. Representatives from many countried contribute their condolations

Obituary on Fergus Rogers from The Times Reproduction of an obituary on Fergus Rogers which appeared in The Times on 4th December 2006.

Profile of Jane Skerrett The new director of NASS, the ankylosing spondylitis society in Great Britain, presents her background and intentions.

Vice president celebrating 75 years Report of a symposium held on the occasion of the 75th birthday of ASIF vice president Ernst Feldtkeller as part of the 2007 congress of the German association of rheumatology, by ASIF president Jon Erlendsson

Watercolours by Ernst Feldtkeller Reproduction of two watercolours by ASIF vice president Ernst Feldtkeller.

Experiences as a 75 years old patient with AS Printed version of a lecture given by ASIF vice president Ernst Feldtkeller.on the occasion of his 75th birthday in Wiesbaden, Germany

Report on the Spondyloarthritis congress 2006 in Gent, Belgium English version of a report by ASIF vice president Ernst Feldtkeller.published originally in the quarterly journal of the ankylosing spondylitis patient organisation in Germany

Report on ASAS workshop 2007 in Bath, UK Report by ASIF vice president Ernst Feldtkeller on the workshop of the "Assessment in Ankylosing Spondylitis international working group" (ASAS) which took place in January 2007 in Bath

ASIF News No. 6 (November 2007)

The 8th ASIF Council Meeting Report by the ASIF president Jon Erlendsson, Horsens, Denmark

Copyright: What has to be regarded by editors of AS membership journals? Lecture presented by ASIF vice president Ernsr Feldtkeller at the 2007 ASIF Council meeting in Jáchymov

Rheumatology in the Gaudi city Report on the 2007 EULAR Congress in Barcelona by Prof. Dr. Ernst Feldtkeller, München Germany, ASIF vice president

ASIF vice president awarded with Kussmaul medal of DGRh .Award dedicated by the German Association of Rheumatology to „outstanding personages who have decisively shaped rheumatology in Germany by their life work or by a significant singular achievement “

ASIF address and Executive Committee New member of the ASIF Executive Committee is Jane Skerrett, director of NASS, Graet Britain

ASIF News No. 7 (April 2008)

Austria to host ASIF Council meeting in 2009 The ASIF Executive Committee accepted the invitation to hold the next ASIF Council meeting in mid October 2009 in Bad Gastein, a spa where ankylosing spondylitis is treated with a combination of radon inhalation and hyperthermia at the end of a 2-km long mining gallery in the Alpine mountains

The ASAS Workshop 2008 in Toronto AS Researchers connected in the "Assessment of SpondyloArthrisis international Society" (ASAS) reported the presnt state of their research in AS. Some of them are shown in illustrations of the article.

ASIF & ASAS & EULAR: Historic Meeting at the Zürich Lake Members of the ASAS Steering Committee met with 17 AS patients from 10 countries in the EULAR house near Zürich to create a patient-understandable version of the ASAS/EULAR recommendations for the management of AS.

Interviews with the ASAS president and secretary .Reto Baliarda, editor of the membership journal “vertical” of the AS association in Switzerland, interviewed the ASAS president and the ASAS secretary. Subject was the good cooperation between rheumatologists and well informed patients with AS.

Focus on the Patient” – Patient Associations’ Best Practice Meeting 2008 in Helsinki ASIF treasurer Torben Jørgensen gives a report of a meeting in Helsinki with about 100 patients with auto-immune diseases participating.

Present Situation of AS Patients in Japan Dr. INOUE Hisashi, General Secretary of the Japan Ankylosing Spondylitis Club, presents the results of a study on the epidemiology, disease onset, diagnosis, familial occurrence, onset triggers, HLA-B27, associated diseases, treatment, and impact on social life of ankylosing spondylitis in Japan.

Ankylosing spondylitis in Moldavia Aurel Sarivan, a patient with AS living in the Republic of Moldavia, gives a report on a group of patients with AS fighting together against the disease in the poorest country of Europe.

Major genetic breakthrough for ankylosing spondylitis brings treatment hope Jane Skerrett, director of the National Ankylosing Spondylitis Society in the UK and member of the ASIF Executice Committee, reports new results of genetic research in AS. The research was sponsered by the Wellcome Trust in the UK.

Insidious Onset? In the criteria for inflammatory back pain of 1977, part of the ESSG criteria of the spondyloarthritides, "insidious onset" is one of the criteria. Since a sudden onset of AS is not at all seldom, researchers in Berlin created a new set of criteria for inflammatory back pain in which this criterion is no more contained.

HLA-B27: Why frequent in some countries and seldom in others? HLA-B27 and thus also ankylosing spondylitis is much more frequent in northern than in southern countries. A cause for this may be that carriers of HLA-B27 are less susceptible for some infections prevalent in northern countries. Prof. Mathieu et al. from the University of Cagliari, Sardinia, discuss another possible explanation: Carriers of other HLA-B genes are less susceptible for malaria than carriers of HLA-B27.

Not less females with ankylosing spondylitis! .According to the results of a survey by the AS patient organisation in Germany, the percentage of females is low among AS patients diagnosed in former decades, but almost 50% among AS patients diagnosed recently. A reason may be that the ankylosis progresses faster in male than in female patients with AS, and that the diagnosis was often made in former decades only after radiologic changes in the spine were visible.

Laurie Savage appointed to SAA Executive Director Laurie Savage who represented the Spondylitis Association of US-America at the ASIF Council meeting in Jáchymov in 2007, was appointed as new Executive Director of this organisation.

ASIF News No. 8 (October 2008)
Austria to welcome ASIF delegates in October 2009	The 9ih ASIF Council meeting will take place from October 15th to October 18th, 2009 in Bad Hofgastein, a market town and the historical hub of the Gastein Valley in Austria. It is located in the sunniest and broadest point of the valley and is an old-established spa and winter sports resort.
Efficacy of Radon thermal gallery therapy in ankylosing spondylitis	The combination of hyperthermy and radon inhalation has an anti-inflammatory effect and enables many patients to reduce their consumption of inflammatory drugs. Since the risk connected with NSAIDs is much higher than the possible risk connected with the low-dose radon therapy, the treatment in Gastein is a risk-reducing therapy of AS.
ASIF contributes to ASASQoL questionnaire	Members of the Steering Committee of the Assessment of Spondyloarthritis international Society (ASAS) invited 12 patients with AS to contribute to the ASAS Quality of Life questionnaire at a workshop in Düsseldorf, Germany,.
ASIF booklet on AS assessment and criteria	Methods usually applied in the assessment of of the course of the disease, as well as classification and diagnostic criteria of AS and the spondyloarthritides are collected in a booklet created by ASIF vice president Ernst Feldtkeller in cooperation with members of ASAS.
Evidence of therapy forms in treating ankylosing spondylitis	Random-controlled studies are not the only way to reach evidence of the usefullness of therapy forms. The usefullness of physical therapy and of extended patient instruction is evident.by plausibility and experience without such studies.
The place of physical therapy in the treatment of ankylosing spondylitis	Also Professor Asim Khan and his colleague Mazen Elyan in Cleveland, Ohio, summarize important recommendations for the physical therapy and extended instruction of patients with AS.
The ACE campaign to end discrimination against people with arthritis	The Arthritis Consumer Experts (ACE) launched a successful campain and introduced a JointHealth™ Report Card on provincial formulary listings for biologic response modifiers in Canada
Patient Advocacy is working	In the summer of 2007 the Canadian Spondylitis Association (CSA) decided to take their meeting to Alberta to help raise the awareness of the need for patient coverage of the new biologics.
Package inserts made readable	In Germany, a group of patients with different diseases joined to create examples of user-friendly package information leaflets and presented the result in a successful press conference

ASIF News No. 9 (April 2009)
ASIF Council Meeting October 15th to 18th 2009	Paul Pocek, President of the Austrian Spondylitis Society and the organizing committee are calling all delegates to attend the 9th ASIF Council meeting in Bad Hofgastein, Austria, from Thursday October 15th to Sunday October 18th.
An Englishman in Gastein's «Heilstollen»	Matt Homfray, member of the National Ankylosing Spondylitis Society (NASS) in Great Britain, describes his visit in the «Heilstollen», despite being sceptical. After his week in Gastein he felt more supple than he had in months, if not years.
ASAI National Awareness Campaign	Seoirse Smith, Secretary of the Ankylosing Spondylitis Association of Ireland (ASAI) presents th AS Awareness Week «Get your Back up» of ASAI. This campaign included the Irish rugby player John Hayes. It achieved a high media attention. Moreover, the number of vosits of the ASAI website increased more than 100-fold.
Ankylosing Spondylitis in Good and Worse Times	Study with 12 AS patients about how the fluctuations (symptom-free and painful periods, fatigue, incapacitating pain and crippling mobility) interfere with everyday life.
ASAS Workshop of Ankylosing Spondylitis Researchers 2009 in Rome	70 ASAS members including ASIF vice president Ernst Feldtkeller participated in this workshop: The topics being discussed were the following ones: Criteria for «axial spondyloarthritis»; ASAS slide kit and ASAS handbook; Criteria for the «peripheral arthritis»; Psoriasis associated with ankylosing spondylitis and an Update of recommendations for the treatment of AS with TNF-alpha blockers.
11th EULAR Conference for PARE in Budapest	More than 100 delegates participated at this conference in November 2008 with the following presentations: Work and rheumatic diseases - the Hungarian perspective; Impact of arthritis/rheumatism on the population of Europe; Study «Fit for Work» including the employers perspective; Current drug therapies and the importance of early diagnosis. Jane Skerrett, member of the ASIF Executive Committee participated at this conference too.
Pain Perception of People with Chronical Diseases	Research in patients suffering from a rheumatic condition. Conclusions: Pain is an important phenomenon in rheumatic diseases. Half of all the patients expects the physician to initiate a conversation about pain. More than half of the patients with pain find that this pain is not under control. The most additional symptom in rheumatic patients is fatigue.

ASIF News No. 10 (November 2009)
The 9th ASIF Council Meeting	The 9ih ASIF Council meeting took place from October 15th to October 18th, 2009 in Bad Hofgastein, Austria. Jon Erlendsson resigned from his presidency. His successor is Seoirse Smith from Ireland. Hedley Hamilton (Great Britain) was elected the new vice president. He replaces Ernst Feldtkeller, Germany.
Activities of the ASIF Executive Committee in 2007-09	Summary of the opening remarks by the outgoing president, Dr. Jon Erlendsson, Denmark, at the 9th ASIF Council Meeting held in Bad Hofgastein, Austria.
ASIF contributes to ASASQoL questionnaire	Members of the Steering Committee of the Assessment of Spondyloarthritis international Society (ASAS) invited 12 patients with AS to contribute to the ASAS Quality of Life questionnaire at a workshop in Düsseldorf, Germany,.
ASIF booklet on AS assessment and criteria	Methods usually applied in the assessment of of the course of the disease, as well as classification and diagnostic criteria of AS and the spondyloarthritides are collected in a booklet created by ASIF vice president Ernst Feldtkeller in cooperation with members of ASAS.
Evidence of therapy forms in treating ankylosing spondylitis	Random-controlled studies are not the only way to reach evidence of the usefullness of therapy forms. The usefullness of physical therapy and of extended patient instruction is evident.by plausibility and experience without such studies.
The place of physical therapy in the treatment of ankylosing spondylitis	Also Professor Asim Khan and his colleague Mazen Elyan in Cleveland, Ohio, summarize important recommendations for the physical therapy and extended instruction of patients with AS.
The ACE campaign to end discrimination against people with arthritis	The Arthritis Consumer Experts (ACE) launched a successful campain and introduced a JointHealth™ Report Card on provincial formulary listings for biologic response modifiers in Canada
Patient Advocacy is working	In the summer of 2007 the Canadian Spondylitis Association (CSA) decided to take their meeting to Alberta to help raise the awareness of the need for patient coverage of the new biologics.
Package inserts made readable	In Germany, a group of patients with different diseases joined to create examples of user-friendly package information leaflets and presented the result in a successful press conference

ASIF News No. 11 (November 2010)
World Ankylosing Spondylitis Day: Events in the Countries)	For the first time, a World Ankylosing Spondylitis Day was held on May 8, 2010 in several countries. The aim was to make ankylosing spondylitis and the disease-specific organisation of patients with this disease known in the public. We report on events which took place in Portugal, Turkey, Hungary, and the United Kingdom. The reports shall encourage patients with ankylosing spondylitis to start similar actions also in their countries.
ASIF Council meeting 2011 in Ismir, Turkey	The ASIF executive committee has graciously accepted an invitation from Dr. Tuncay Duruöz, president of The Ankylosing spondylitis society in Turkey, Ankilosan Spondilit Hasta Dernegi (ASHAD), to host the next ASIF Council meeting in Izmir, Turkey.
News from NASS, United Kingdom	The National Ankylosing Spondylitis Society (NASS) in the united Kingdom have had a very busy first 6 months in 2010, with launching a new document entitled “Looking Ahead – Best practice for the care of people with ankylosing spondylitis (AS)” which can be downloaded from the NASS website under http://www.nass.co.uk/documents/NASSLookingAheadReport-April2010.pdf ; with a member survey the report on which is likewise available in the NASS website; a walk on World AS day entitled «NASS en Masse»; and with launching a new gymn guide for people with AS called «Back in Action».
How should first-responders deal with AS patients in an emergency setting?	Lecture presented at the 9th ASIF Council meeting 2008 in Bad Hofgastein by the former ASIF president Dr. Jon Erlendsson, rheumatologist in Horsens, Denmark, with presentation of the DVD «Ankylosing spondylitis: Managing patients in an emergency setting» produced by the Spondylitis Association of America (SAA). You can watch the DVD on http://www.spondylitis.org/physician_resources/ems_video.aspx
Every seventh patient with ankylosing spondylitis suffers a spinal fracture during his/her life	Reto Baliarda, editor of the journal of the Swiss AS patient organisation and ASIF webmaster, summarises some research results on spinal fractures in patients with ankylosing spondylitis (see also ASIF News No. 2 pages 12–16). A minor incident may be sufficient to cause such a fracture, especially with increasing age. A timely diagnosis after an accident may prevent neurological complications.
«As patients with ankylosing spondylitis, we have to be more careful than others»	Interview by Reto Baliarda, editor of the membership journal of the Swiss AS society, with Ernst Feldtkeller, scientific advisor to ASIF and scientific editor of the membership journal of the German AS society, on his staircase accident in 2009 leading to a vertebral fracture, and his consequences for patients with ankylosing spondylitis.
Ankylosing Spondylitis Research Group in Iran?	In Iran an Ankylosing Spondylitis Research Group was founded in 2002 with the purpose of “a better understanding of the disease, better quality of life of patients”. They collaborate with the Iranian Ankylosing Spondylitis Association. Their research is focussed on genetic and immunological studies.
Successful treatment of cauda equina syndrome complicating ankylosing spondylitis	Cauda equina syndrome (horse tail syndrome) is a seldom complication of longstanding AS where the lower end of the spinal channel is inflamed, often associated with neurological deficits. No successful treatment was available upto now. The authors describe a successful treatment with infliximab in a 66-years old man with ankylosing spondylitis.
Fatigue in patients with ankylosing spondylitis	In a study with 62 patients with AS, 50% had severe fatigue (reply to fatigue question in BASDAI questionnaire at least half scale length). 55% had sleep disorders , and 27% had depression. Besides the disease activity, the effects of psychogenic factors, especially depression, should be taken into consideration in the management of AS.
The prevalence of obstructive sleep apnea in patients with ankylosing spondylitis	Obstructive sleep apnea is a condition characterized by frequent episodes of upper airway collapse during sleep preventing air from entering the lungs. It can lead to excessive daytime sleepiness and is associated with car crashes involving drivers who fall asleep, and cardiovascular disease. In this study 23% of patients with ankylosing spondylitis had obstructive sleep apnea, compared with 3% in the general population.
International Workshop of Ankylosing Spondylitis Researchers in Berlin	Every year in January the Assessment of SpondyloArthritis international Society (ASAS) holds their annual workshop in the home town of AS researchers. Reports of ASAS workshops in the years 2007–2009 were contained in ASIF News No. 5, 7, and 9. The workshop of 2010 took place in Berlin. Among the participants were again Ernst Feldtkeller, former ASIF vice president, and Tuncay Duruöz, member of the ASIF Executive Committee. Aim of ASAS is the creation of criteria for classification and diagnosis, of assessment methods for the outcome documentation, and of recommendations for the management of the spondyloarthritides (inflammatory spine diseases)..

ASIF News No. 12 (January 2012)
The 10th ASIF Council Meeting	The 10th ASIF Council meeting took place in Izmir, Turkey, from the 17th to the 20th of November 2011. Delegates from 13 countries attended the meeting, which was excellently organised by the Turkish Spondylitis Association (ASHAD) and its president Tuncay Duruöz. Three new patient organizations from China (two delegates attended the meeting), South Korea and Cyprus were approved. The elections had three positions to fill, as Secretary Ken Mulholland (Canada), Treasurer Torben Jørgensen (Denmark) and Jane Skerrett (UK) had decided to step down. The delegates voted for Michael Mallinson (Canada) as the secretary and René Bräm (Switzerland) as the new Treasurer. In Addition, Debbie Cook (UK) was elected as a new member of the board. There were several interesting contributions from different member countries. Moreover, president Seoirse Smith and vice-president Hedley Hamilton presented their project for the new website.
Report on the 7th International Congress on Spondyloarthropathies 2010 in Gent	ASIF scientific advisor Ernst Feldtkeller visited the congress, which takes place in Gent, Belgium, every second year. Rheumatologists from all over the wolrd presented various scientific studies, such as «Classification Criteria and Diagnosis», «Activity Limitations», «Heart Involvement in Ankylosing Spondylitis», «Progression to Ankylosing Spondylitis» or «Progression of the Ankylosis in Spite of an Anti-TNF-Alpha Therapy».
2011 ASAS Workshop of Spondyloarthritis Researchers in Brussels	More than 50 international AS researchers had their annual workshop, organized by the Assessment of Spondyloarthritis International Society (ASAS). They discussed various scientific subjects such as «Difficult assessment of magneto-resonance images» or a new study of NSAID efficacy. ASAS president, professor Désirée van der Heijde (Netherlands) stepped down. Her successor is her fellow countryman, Dr Robert Landewé.
Report on the European Rheumatology Congress (EULAR) 2011 in Brussels	Around 16000 participants joined the EULAR congress in London. 1500 scientific posters were presented during this annual meeting. They contained studies on the improvement or early diagnosis, disease progression, influence of the patient behavior on the course of the disease, Anti TNF therapy and many more. AS researcher Maxime Dougados was elected as the new president of EULAR.
Essay: «On outside I cannot dance anymore, but inside I continue to dance»	Article written by Lill Due, a former ballet dancer from Bergen, Norway. Her contribution on her life with ankylosing spondylitis was awarded with the Edgar Stene Prize of 2011.
Article: «Smoking worsens early course of axial spondyloarthritis»	Article by Pedro Machado (Portugal), Désirée van der Heijde (Netherlands) et al. They found out that smoking worsens the disease. It particularly increases joint inflammation visible in magneto-resonance imaging.

To the ASIF Homepage

*ASIF News No. 1* (Winter 2003)
ASIF News first edition	"ASIF News" indended as a method of communication of ASIF member societies. Distribution of articles which may be printed in journals of member organisations. Invitation to contribute with own articles
ASIF update	New ASIF Executive Committee elected in the ASIF Council meeting of October 2002
SVMB 25th jubilee	Report on the celebration of the 25th anniversary of the Swiss ankylosing spondylitis society (Schweizerische Vereinigung Morbus Bechterew) by Seoirse Smith
Report on EULAR Congress June 2003	Report on the congress held in Lisbon, Portugal, by Ernst Feldtkeller and Jon Erlendsson, members of the ASIF Executive Committee
ASIF website updates	Pages on "How to set up a new AS society?" and "How to become an ASIF member society?" recently added to ASIF website
ASIF projects	Proposed ASIF initiatives which might be realized within the next years if enough members are willing to contribute
ASIF research	Results of scientific studies on ankylosing spondylitis initiated and coordinated by ASIF

*ASIF News No. 2* (December 2004)
Denmark is calling	Announcement of the 7th ASIF Council meeting to be held in September 2005 in Sandbjerg Estate, Denmark
ASAI in Ireland launch website	Website of the ankylosing spondylitis society in Ireland can be found under the address www.ankylosing-spondylitis.ie
report on EULAR congress 2004 in Berlin	Short report by ASIF vice president Ernst Feldtkeller
Report on AS symposium in Bad Gastein	Short report by ASIF vice president Ernst Feldtkeller
New AS society in Turkey	"Ankilozan Spondilit Hasta Dernegi (Ankylosing Spondylitis Patient Association in Turkey) founded in 2003. by Dr. Tuncay DURUÖZ, rheumatologist, assistant professor at Celal Bayar University, Manisa, President of ASHAD
Frontiers in inflammatory joint disease	Report on Canadian arthritis research forum held in May 2004, by Nils Linholm, Ontario, Canada
Ankylosed spine in ancient history: “Apa Bane”	The skeletton of the famous Coptic saint Apa Bane (died 356 AD) was found by archeologists with an ankylosed spine. Report by paleologist Wolfgang Michael Pahl and ASIF vice president Ernst Feldtkeller
Therapy of ankylosing spondylitis 4000 years ago	Papyrus scrolls from about 1900 B.C. found in the ruins of the Ramesseum near the entrance of the Valley of the Kings in Egypt contain rescriptions against stiffness and crookedness. Report by ASIF vice president Ernst Feldtkeller
"Two B or not two B?"	Report on the 4th International Congress on Spondyloarthropathies held in October 2004 in Gent, Belgium, by ASIF vice president Ernst Feldtkeller
Vertebral fractures in patients with ankylosing spondylitis	Result of an ASIF survey carried out in two steps in 2000 and 2001. By Ernst Feldtkeller, Debby Vosse, Jon Erlendsson, Piet Geusens, and Sjef van der Linden. Scientific publications appeared in Rheumatology International 25 (2006) 234–239 and in the Journal of Rheumatology 31 (2004) 1981–1985.
New in ASIF website	New in the ASIF website are Guidebooks for patients with ankylosing spondylitis in Russian and in Hebrew language.

*ASIF News No. 3* (February 2006)
Messages from ASIF president and treasurer	ASIF is now registered in Denmark and has a Danish bank account. In Geat Britain this was only possible under restricting conditions, and in Ireland it was not possible at all. The new Internet address of ASIF is www.spondylitis-international.org
2005 Council meeting	Report on the 7th ASIF Council meeting held in September 2005 in Sandbjerg Estate, Denmark, by ASIF vice president Ernst Feldtkeller
Nils Linholm †	Nils Linholm, delegate from the AS societies in Canada and until 2002 ASIF secretary, died on January 17th, 2006 in the age of 76 years. By ASIF secretary Ken Mulholland, past president of the Ontario Spondylitis Association.
News from Belgium	Belgium rheumatic groups agree to work together. Report by Coby Otter, Belgian delegate and member of the ASIF Executive Committee
News from Canada	2.5 million Canadian dollars collected for Spondyloarthritis research
Ankylosing spondylitis society in Iran	Ankylosing spondylitis society in Iran founded in 1993
10 recommendations on AS treatment	ASAS/EULAR recommendations for the management of ankylosing spondylitis. By ASIF president Jon Erlendsson
Survey on disease activity and treatment	Results of a survey on the disease activity and treatment of ankylosing spondylitis in Germany, presented by ASIF vice president Ernst Feldtkeller at the ASIF Council meeting held in 2005 in Sandbjerg, Denmark
Neurocognitive therapy of ankylosing spondylitis	A pilot study with 19 patients with ankylosing spondylitis participating, was carried out to reveal the success rate of this new therapy method. Among 15 participants who had still a zero head-to-wall distance, 11 (73%) lost their AS symptoms. Some patients treated formerly with this method are already symptom-free since 16 years. The results suggest that the central nervous system (so far neglected in rheumatic research) plays a major role in the pathogenesis of the disease. Report by ASIF vice president Ernst Feldtkeller and rheumatologist Herbert Kellner
Recent updates on ASIF website	The pages containing information on AS societies worldwide now include also the newly founded AS society in Brazil and the AS section of the Association Polyarthrite in the French-speaking part of Belgium

*ASIF News No. 4* (October 2006)
Prague invites ASIF delegates for 2007	For the ASIF Council meeting in September 2007 the delegates will meet in Prague and will be transported to Jáchymov spa.
Social leagues of EULAR	ASIF president Jon Erlendsson describes the functions of the EULAR (European League Against Rheumatism) Social Leagues and expresses the hope that ASIF will soon become an international member besides many national member societies.
Impressions from the EULAR congress 2006 in Amsterdam	Report on the annual European Congress of Rheumatologie which took place in June 2006 in Amsterdam, by Dr. Anne Gitte Loft, rheumatologist in Vejle, Denmark
Iceland – a new member of ASIF?	ASIF president Jon Erlendsson visited Iceland in his family holidays and contacted representatives of the ankylosing spondylitis branch of "Gigtarfélag Islands"(Icelandic League against Rheumatism).
The Dutch "Reumapatientenbond"	Cor van Drogen, member of the "Werkgroep Bechterew" within the association of patients with rheumatic diseases in the Netherlands, will investigate the possibility to renew their membership in ASIF after they were an ASIF member in the first several years after the foundation of ASIF.
Research prize for contribution to easy diagnosis of early ankylosing spondylitis	Joachim Sieper and Martin Rudwaleit from Berlin were rewarded with the research prize of the German ankylosing spondylitis society for their prosal to estimate the probability of ankylosing spondylitis in a patient with chronic back pain by combining the sensitivity and specificity of test results characteristic for AS.
Goals of ankylosing spondylitis patient organisations	ASIF vice president Ernst Feldtkeller was invited to present at the Turkish Congress of Rheumatology a lecture on the contributions of AS patient organisations to patient health and medical research.

ASIF News No. 5 (March 2007)
President's message	Opening remarks to these ASIF News and invitation to contribute to future ASIF News with own ideas and experiences
2007 ASIF Council meeting	Announcement of the ASIF Council meeting which will take place in September 2007 in Jáchymov (Czech Republic)
Fergus Rogers remembered	Fergus Rogers, ASIF president from 1988 to 2002 and director of the Britisch ankylosing spondylitis society for 26 years, died on 17th November 2006. Representatives from many countried contribute their condolations
Obituary on Fergus Rogers from The Times	Reproduction of an obituary on Fergus Rogers which appeared in The Times on 4th December 2006.
Profile of Jane Skerrett	The new director of NASS, the ankylosing spondylitis society in Great Britain, presents her background and intentions.
Vice president celebrating 75 years	Report of a symposium held on the occasion of the 75th birthday of ASIF vice president Ernst Feldtkeller as part of the 2007 congress of the German association of rheumatology, by ASIF president Jon Erlendsson
Watercolours by Ernst Feldtkeller	Reproduction of two watercolours by ASIF vice president Ernst Feldtkeller.
Experiences as a 75 years old patient with AS	Printed version of a lecture given by ASIF vice president Ernst Feldtkeller.on the occasion of his 75th birthday in Wiesbaden, Germany
Report on the Spondyloarthritis congress 2006 in Gent, Belgium	English version of a report by ASIF vice president Ernst Feldtkeller.published originally in the quarterly journal of the ankylosing spondylitis patient organisation in Germany
Report on ASAS workshop 2007 in Bath, UK	Report by ASIF vice president Ernst Feldtkeller on the workshop of the "Assessment in Ankylosing Spondylitis international working group" (ASAS) which took place in January 2007 in Bath

ASIF News No. 6 (November 2007)
The 8th ASIF Council Meeting	Report by the ASIF president Jon Erlendsson, Horsens, Denmark
Copyright: What has to be regarded by editors of AS membership journals?	Lecture presented by ASIF vice president Ernsr Feldtkeller at the 2007 ASIF Council meeting in Jáchymov
Rheumatology in the Gaudi city	Report on the 2007 EULAR Congress in Barcelona by Prof. Dr. Ernst Feldtkeller, München Germany, ASIF vice president
ASIF vice president awarded with Kussmaul medal of DGRh	.Award dedicated by the German Association of Rheumatology to „outstanding personages who have decisively shaped rheumatology in Germany by their life work or by a significant singular achievement “
ASIF address and Executive Committee	New member of the ASIF Executive Committee is Jane Skerrett, director of NASS, Graet Britain

ASIF News No. 7 (April 2008)
Austria to host ASIF Council meeting in 2009	The ASIF Executive Committee accepted the invitation to hold the next ASIF Council meeting in mid October 2009 in Bad Gastein, a spa where ankylosing spondylitis is treated with a combination of radon inhalation and hyperthermia at the end of a 2-km long mining gallery in the Alpine mountains
The ASAS Workshop 2008 in Toronto	AS Researchers connected in the "Assessment of SpondyloArthrisis international Society" (ASAS) reported the presnt state of their research in AS. Some of them are shown in illustrations of the article.
ASIF & ASAS & EULAR: Historic Meeting at the Zürich Lake	Members of the ASAS Steering Committee met with 17 AS patients from 10 countries in the EULAR house near Zürich to create a patient-understandable version of the ASAS/EULAR recommendations for the management of AS.
Interviews with the ASAS president and secretary	.Reto Baliarda, editor of the membership journal “vertical” of the AS association in Switzerland, interviewed the ASAS president and the ASAS secretary. Subject was the good cooperation between rheumatologists and well informed patients with AS.
Focus on the Patient” – Patient Associations’ Best Practice Meeting 2008 in Helsinki	ASIF treasurer Torben Jørgensen gives a report of a meeting in Helsinki with about 100 patients with auto-immune diseases participating.
Present Situation of AS Patients in Japan	Dr. INOUE Hisashi, General Secretary of the Japan Ankylosing Spondylitis Club, presents the results of a study on the epidemiology, disease onset, diagnosis, familial occurrence, onset triggers, HLA-B27, associated diseases, treatment, and impact on social life of ankylosing spondylitis in Japan.
Ankylosing spondylitis in Moldavia	Aurel Sarivan, a patient with AS living in the Republic of Moldavia, gives a report on a group of patients with AS fighting together against the disease in the poorest country of Europe.
Major genetic breakthrough for ankylosing spondylitis brings treatment hope	Jane Skerrett, director of the National Ankylosing Spondylitis Society in the UK and member of the ASIF Executice Committee, reports new results of genetic research in AS. The research was sponsered by the Wellcome Trust in the UK.
Insidious Onset?	In the criteria for inflammatory back pain of 1977, part of the ESSG criteria of the spondyloarthritides, "insidious onset" is one of the criteria. Since a sudden onset of AS is not at all seldom, researchers in Berlin created a new set of criteria for inflammatory back pain in which this criterion is no more contained.
HLA-B27: Why frequent in some countries and seldom in others?	HLA-B27 and thus also ankylosing spondylitis is much more frequent in northern than in southern countries. A cause for this may be that carriers of HLA-B27 are less susceptible for some infections prevalent in northern countries. Prof. Mathieu et al. from the University of Cagliari, Sardinia, discuss another possible explanation: Carriers of other HLA-B genes are less susceptible for malaria than carriers of HLA-B27.
Not less females with ankylosing spondylitis!	.According to the results of a survey by the AS patient organisation in Germany, the percentage of females is low among AS patients diagnosed in former decades, but almost 50% among AS patients diagnosed recently. A reason may be that the ankylosis progresses faster in male than in female patients with AS, and that the diagnosis was often made in former decades only after radiologic changes in the spine were visible.
Laurie Savage appointed to SAA Executive Director	Laurie Savage who represented the Spondylitis Association of US-America at the ASIF Council meeting in Jáchymov in 2007, was appointed as new Executive Director of this organisation.