Street: Tollbugt 4
District: 3044 Drammen
Country: Norway
Tel: 0047 32809090
Fax: 0047 32809095
E-Mail: adm@fibromyalgi.no
Website: www.fibromyalgi.no
Norges Fibromyalgi Forbund / Norwegian Fibromyalgia Association
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
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 | 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.