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.



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