Lithuania

Ankylosing spondylitis society in Lithuania:

Bechterevo Liga Sergančiųjų Draugija "Judesys"

http://www.bechterevoliga.lt/ .

 

Address: Vytauto g. 69, Trakai, Identifikavimo kodas 301539690

Email: grigiene.ruta@gmail.comgrigiene.ruta@gmail.com

Founded in 2009

Number of Members
160members
 
Local branches and nature of activities
The association acts as a single unit, with coordinators in the main cities
 
Board
Chairman - Martynas Grockis
Vicechairman - Ruta Grigiene
 
Office staff
No office staff
 
Contact for ASIF
 
Medical advisors

Professor Jolanta Danoniene President of Lithuanian Rheumatology Association; member of EULAR clinical research committee, WHO expert;
Ass. Professor  Asta Baranauskaitė -  Head of Rheumatology Clinic in Kaunas University of Health sciences; 
Dr. Margarita Pileckytė – doctor rheumatologist at Rheumatology Clinic in Kaunas University of Health Sciences; 
Vidmantas Zaveckas, PhD  - doctor physiotherapist.

 
Newsletter and frequency
Association of patients sufering from Bechterev Disease "Judesys" newsletter - booklet.  Editor: Martynas Grockis
 
Other publications
Preparations to publish a newsletter about patient rights, innovative treatment methods and use of medicines, patients rehabilitation and work possibilities.

Articles about traditional and alternative treatment methods, information which is relevant for patients, regulation of activities as well as experience are constantly published and renewed by doctors in the internet page of the assiciation.
 
Most important events in past and coming year
  • Organise conferences twice a year
  • Annual Summer camp (for single weekend in summer we all gather at a summer camp, where we listen to lectures and seminars on healthy living among other activities).
  • Joint projects with Council of Lithuanian Patients' Organisations
    • Arts therapy
    • EU commission activities
    • Eu structural funds council activities
 
 
Most important/ discussed  issues
Our Aims:
  • To double treatment subsidies for adult patients
    • Currently between 3 and 4.5% adults are granted compensated treatment.
    • The aim is to achieve EU average of 11%
  • To change the compensation system for biologic therapy - from centralised public purchases to the list of items under compensation mechanism.
  • Expanded possibilities for rehabilitation (for adults - an average of 30 days/2 times a year (depending on intensity of the illness).
  • Establish a day support centre (especially for those newly diagnosed)
    • We would provide counselling with a psychologist
    • Sessions with a kinesitherapist
    • Massage
    • Tutoring of family members on how to provide help to the patients.
  • Longer summer camps - up to a week long, including a course on healthy living: diet, workouts, yoga etc.

 

 
Remarks
 

 

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Updated: June 2017