Norway

Ankylosing spondylitis society in Norway:

Norsk Revmatikerforbund (NRF) / BEKHTEREV 
Founded in 1986

 

Postboks 2653 Solli 
N-0203 OSLO 
Phone (+47) 22 54 76 00 
Fax (+47) 22 43 12 51 
eMail (NRF): post@revmatiker.no 
Home page of NRF: http://www.revmatiker.no 
Homepage of BEKHTEREV: http://www.bekhterev.no

 

 

 

Chairman NRF Jan Grund , Address: same as office, Phone (+47) 464 10 577,eMail: forbundsleder@revmatiker.org
AS Representative in NRF Liv Margot Sviland, Phone (+47) 415 32 601, Austringen 15, N-4365 Naerboe, eMail: leder@bekhterev.com
International contacts Liv Margot Sviland, Address same as above
Membership 1. Jan. 2012 About 1500 AS sufferers in Bechterew groups 3600 members with AS (out of more than
36 000 NRF members; diagnosis of members not known to NRF)
Local branches 12 local AS societies with weekly exercises  
225 local branches totally
Newsletter «Revmatikeren» (newsletter of NRF)
Period of appearance 6 per year
Newsletters of AS groups
  • «Bechterewer'n» (4 per year), journal of Oslo Bechterew-Forening (www.bekhterevern.no) with subscribers in all parts of Norway
  • Some local ankylosing spondylitis societies have their own newsletter
Further publications
  • «Bekhterevs sykdom, Informasjon til nydiagnostiserte, pårørende, helsepersonell og andre» (Bekhterev disease, Information to new diagnostic, relatives, health personal and others)
  • «Bekhterev informasjonsfolder»(AS information folder)
  • AS: Disease impact and research evidence of physiotherapy interventions, Faculty of Medicine University of Oslo
  • «Informasjonsmappe til nydiagnostiske Bekhtervere» (Information package for new diagnostic AS patients)
  • «Spørsmål og svar om bekhterevs sykdom for pasienter»(Questions and answers about AS)
  • «Bekhterev Training video» (Training video for AS patients) VHS, DVD
  • «Adressing gender differences in Axial SpA». Survey 2012 (early diagnosis
    and treatment)

Important events in past and future

2012:

 

  • Patient survey by Bekhterev Norge: Addressing gender differences in Axial SpA. More than 600 patients responded. Focusing women an AS.
  • World Ankylosing Spondylitis Day: Breakfastmeeting
  • Bekhterev Norge invited politician and rheumatologist to this meeting. Presented the result from the Survey.
  • Several media outlets covered the results of the survey in May 2012. In addition, some of the largest newspapers and magazines in Norway conducted interviews with patients and published the stories.
  • The head of the Norwegian Rheumatology Association, Dr Erik Rødevand, published an article in the Norsk Rheuma Bulletin in September 2012.
  • Web page with media references - http://www.bekhterev.no/event/doLink/famid/315568
  • Follow-up meeting during Rheumatism Day in October 2012 - National AS conference
  • Bekhterev Norge invited patients, relatives, physicians and the general public to a WebEx focusing on early diagnosis and treatment of axial SpA.
  • Two rheumatologists, one patient and one physiotherapist, gave presentations
    at the event.
  • Watch the Conference on the Internet (speaks Norwegian): http://www.bekhterev.no/se-webinar
     
  • New design on webpage - www.bekhterev.no
  • 28. april - 1. mai: Ankylosing spondylitis seminar, Country conference, National arrangement for AS branches & representatives.

Planed activities 2013:

 

  • 12. - 14. April - Country conference, Ankylosing spondylitis seminar, National arrangement for AS branches & representatives.
  • World Ankylosing Spondylitis Day: Local branches are celebrating World Ankylosing Spondylitis Day with different events
  • «Latest news in research and treatment for AS patients»
  • (Seminar planned in different parts of the country in cooperation
    with the local branches)
  • Seminar - how to deal with media. Best practice on social medias.
Membership fee

NOK 405 per year 
NOK 165 per year per familymember 
NOK 205 per year for children younger than 25 years 
NOK 2000 for firms and other institutions  
Subscription to newsletter of AS group in Oslo from other parts of Norway: NOK 200