European Network of Fibromyalgia Associates

Sweden SRA

The Swedish Rheumatism Association, SRA.

Street: Alströmergatan 39 Box 12851
District: 112 98 Stockholm
Country: Sweden
Tel: +46 8 505 805 00
Fax: +46 8 505 805 50
E-Mail: info@reumatikerforbundet.org
Website: www.reumatikerforbundet.org

Board members:

President name: Anne Carlsson
First Vice President: David Magnusson
Second Vice President: Bo Jonsson
Member: Sara Hjalmarsson
Member: Greta Thorén
Member: Suzanne Ahlkvist
Member: Bertil Eklund
Member: Claes Stjernström
Member: Margreth Halvarsson
Member: Mari Norén Hedberg
Member: Anna Schéle
Member: Kurt Jörgensen
Member: Steinar Walsö-Kanstad
Member: Bo Ringertz
Member: Caroline Liljegren

ENFA representative:Gunilla Göran gunillagoran@hotmail.com

History:
SRA was founded in 1945 and in 1991 SRA accepted responsibility to support people with fibromyalgia in negotiations with the Swedish Neurological Association. Since that SRA has visited decision makers within the government and the parliament, the national social insurance office, the national board of health and welfare to demand better conditions for people with fibromyalgia, especially regarding health care and research. SRA has also sponsored scientific studies on health economics and have been able to show that people in Sweden with fibromyalgia generate the highest costs of all rheumatic diagnoses. SRA is the biggest handicap organization in Sweden and has 52,000 members and 10,000 members have fibromyalgia.

Objectives:
International work: SRA is part of the Nordic Rheumatism Council NRR, European League against Rheumatism EULAR, Lupus Europe, Ankylosing Spondylitis International Federation ASIF and Osteoporosis Europe IOF.
SRA influences society and decision makers. We pursue matters in the community, provide everyday support and finance research to contribute to solving the riddle of rheumatism. The Swedish Rheumatism Association’s goal is social development that gives all people with rheumatic diseases full participation and equality in all areas of society. Important areas are care and rehabilitation, education and work .There are 200 local branches divided in to 24 districts over the whole country. Locally and regionally the districts and the local branches work to influence municipalities and county councils. Most of them have study circles about fibromyalgia, social groups, and also arrange lectures and celebrate International Fibromyalgia Awareness Day.

Achievements, Activities and Events:

Before 2010:

Activity name	Objectives	Date	Venue
Fibro Life	Information about FM. Help to organize self-help groups, 7 different study-books. 4000 people involved in study-groups. 16000 people attended lectures and 500 FM-members were educated in order to became study leaders. The project was presented in EULAR and other scientific conferences.	1993-96	Sweden
Annual Scientific Day	Annual conference to the public on recent fibromyalgia research	1996-continue	Stockholm
Regionally rehabilitation program for fibromyalgia patients. Translation of our patient brochure into seven different language Empowerment	To have rehabilitation program all over the country. Up to now there is six regions in Sweden having rehabilitation programs To give immigrants help to profit information about fibromyalgia Self-management courses for self-help groups. Based upon Kate Lorig´s R.N Dr.PH material	2006-continue 2006 2006	Sweden
New leaflet produced “To live with fibromyalgia”	Information and guidance also to be used for self-help groups	2007	Sweden
International research conference. “Initiative Pain”	To develop the research on chronic non malignant pain from the musculoskeletal system	2007	Sweden
Research project 1.8 million SKR.”Action Against Pain”	Research project at the only hospital in Sweden for rheumatic diseases	2005-2008	Spenshult hospital
SRA became a member of ENFA	To cooperate throw out Europe to raise awareness about fibromyalgia	2009
Workshop for health care professionals about chronic pain	To inform and improve health care professionals about fibromyalgia	2011	Sweden
“Initiative Pain” 1.5 million SKR. each year	Improving care for people with chronic pain	2009-2012	Sweden
“Initiative Pain”	Create a national web based centre for chronic pain	2009-2012	Sweden
Myopain and Leaders Against Pain meeting	Lectures of recent research, advocacy workshop	2008-2009	Washington D.C

Expectations from the Network:
By working together through ENFA and become a strong voice we want to achieve awareness about fibromyalgia and be influential at the European level in all aspects.

Activities

10-01-2010: Myopain conference
October first till October 3th the Myopain conference will be held in Toledo Spain. ENFA will folow this and discuss the outcome in their anual meeting in La Coruna of October 8th
10-08-2010: Coruna Meeting
General meeting of ENFA in A Coruna, Spain
10-09-2010: 1 European Forum of Fibromyalgia
From October 8^th till October 10^th ENFA member ACOFIFA will organize the First European Forum of Fibromyalgia in A Coruna, Spain
10-14-2010: Annual meeting F.E.S.
On October 14th the Dutch Fibromyalgia association F.E.S. wil have there annual general meeting. On that meeting they will speak about the plans for the upcoming years. Afterwards there will be a special event for the volunteers in order to thank them for there work during the year. More information can be found on the website of the Dutch fibromyalgia association after the summer holidays. This website can be found by the participants.