Norway

Norges Fibromyalgi Forbund / Norwegian Fibromyalgia Association



 


Street: Tollbugt 4
District: 3044 Drammen
Country: Norway
Tel: 0047 32809090
Fax: 0047 32809095
E-Mail: adm@fibromyalgi.no
Website: www.fibromyalgi.no

Board members:
President name: Sollrun Dvergsdal
Vice President : Ingrid Woldengen
Secretary: Britt Gubberud
Treasurer: Sigrud Sanden
Member: Elisabeth W. Thomassen
Member: Egil Kivijervi
Member: Ambjoerg Nilsen
Member: 

History:
The Norwegian Fibromyalgia Association  was founded in 1985 by a group of fibromyalgia patients. The association is volunteer-driven with program and decisions made by the members of the board, the national board or the national congress. A small administration supports the board. The purpose is to provide a forum for the exchange of knowledge and experiences of the people affected by fibromyalgia and to strengthen their voice nationwide. We provide self-help programmes, lectures, courses and yearly travel to a warmer climate. Our magazine is published quarterly. We publish on our web-site and Facebook. For 2013 we have 6,700 members.

 

Objectives:

  • To unite everyone suffering from fibromyalgia and others who want to support the association.
  • To make the decease known, understood and accepted by the society.
  • To work for everyone suffering from fibromyalgia and seek influence towards the government to increase the knowledge for fibromyalgia-patients’ situation, so their lives become easier and their quality of life improve.
  • To inform the members about what might cause the decease, developments and treatments. Inform them about medical improvements and social rights.
  • To work for and support research and information-tasks about fibromyalgia.
  • To expand the cooperation with other organizations within the country and abroad, if this may urge our association to achieve its purpose.
  • To establish local- and regional-societies when number of members and geographic scattering demand it.
  • The association is independent of any political party.

 

Achievements, Activities and Events:

Before 2011

Activity name Objectives Date Venue
An annual academic conference on fibromyalgia open for all    Information, guidance  Annual    
Information about fibromyalgia to all compulsory schools in Norway via e-mail   Information, guidance, ensure sick pupils’ rights to adapted education.  2011  
??Information about useful treatments for fibromyalgia-clients to the official social support-offices (NAV) via e-mail  Information, guidance, ensure patients’ rights are enforced.  2011  

In 2012

Activity name Objectives Date Venue
Meeting with the leading opposition politician in Norway, Erna Solberg, to find support for fibromyalgia patients' plight  Information, ensure the legal rights to fibromyalgia patients  2012  
Meeting with the Ministry of Health, to inform and seek support for fibromyalgia patients' plight patients' plight   Information, ensure the legal rights to fibromyalgia patients  2012  
Meeting with the Ministry of Labour, to inform fibromyalgia patients plight  Information, ensure the legal rights to fibromyalgia patients  2012  
Meeting with the Norwegian Directorate of Health to inform about fibromyalgia patients' plight  Information, ensure the legal rights to fibromyalgia patients  2012  
New film about fibromyalgia  Information, guidance, contacts  2012  ??

Future Activities 

Activity name Objectives Date Venue
 New film about fibromyalgia and exercises   Information, guidance, contact   2013  
Short film about fibromyalgia for commercials on television   Information, guidance, increasing members   2013  
 Prepare statistics of change-percent from the social security law to the higher Court regarding fibromyalgia-patients entitled to disability benefits   

Information, guidance, put the media-spotlight on the legal discrimination of patients with fibromyalgia, meeting with the Ministry of Labour regarding legal violations

 2013  
Meeting with the Ministry of Education and Research regarding lack of knowledge about the disease fibromyalgia  Information, guidance, improve the knowledge and acceptance towards doctors and health professionals   2013  

 

Expectations from the Network

We expect ENFA to play a leading role in getting international recognition for the disease. Furthermore we expect ENFA to facilitate the creation of a set of internationally recognized diagnostic criteria. We also expect ENFA to work for funding of research and better diagnostic units on a European basis. We expect ENFA to raise awareness and to help further the education of the European health systems.

  

??History:
     VLFP was founded in 1989 after the appearance of a patient in the radio show “Servicetelefoon” of Martin Dejonghe. At first VLFP operated locally, but in the last 10 years we have become a Flemish organization with 19 local contact groups.

Objectives:
Put everyone who has to do with fibromyalgia directly or indirectly, both patients and non-patients, in contact with each other.
Supplying practical, emotional or other assistance, both to patients and to their family.
Giving information and guidance by editing a magazine and brochures, by giving lectures and on our website and forum.
The promotion of awareness by participation in umbrella organizations such as Reumanet.be, Vlaamse Pijnliga, Vlaams Patiëntenplatform, attending and organizing conferences, making contact with medics, … .

Achievements, Activities and Events:

Be

In 2008

 

In 2009

 

In 2010

 

Future Activities

 

 

 

Expectations from the Network

We expect ENFA to rise awareness on FM in Europe, to support the national patients organizations in common European matters on FM and be a link between them. 

 

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Contact

E-mail : contact@enfa-europe.eu