Danish Fibromyalgia Organisation
President: Søren Harboe
Vice President: Sif Holst
Treasurer: Merete Hornecker
Members: Else Hansen, Bente Stisen, Stine Bundgaard, Berit Høgsted-Nielsen
The Danish Fibromyalgia Association was founded in 1991 by a group of fibromyalgia patients. The association is driven a dedicated staff at the secretariat and a group of active volunteers assisting the board, that make program and policy decisions. The purpose is to provide a venue for the exchange of knowledge and experiences of people affected by fibromyalgia and to strengthen their voice nationwide. It is also a main objective to empower the members through information provided through seminars and our magazine "fibromyalgia.dk" published quarterly, patient leaflets and booklets as well as our website www.fibromyalgi.dk We have currently 3.500 members
- To support, counsel and inform members, relatives and other interested parties.
- To raise awareness of fibromyalgia.
- To further the recognition of the disease as a chronic diseases.
- To support serious research.
- To co-operate with similar organizations.
- To support the fibromyalgia patients leading an active life despite the limitations the disease presents.
To further the above mentioned purposes, we have gained membership of the Myopain Association, the IASP, EFIC and ENFA. We participate in international conferences and meetings.
Our aim is also to support and educate our members to maintain their connection with the flexible labour market when possible.
Achievements, Activities and Events:
|Magazine fibromyalgi.dk||Information, guidance, education||1991||Membersquarterly|
|Helpline||Support-line for fibromyalgia patients, volunteer driven||1991||Copenhagen DK|
|New website www.fibromyalgi.dk||Information, guidance, promotion of interests||2004|
|Coping strategy seminars for members||How to manage the disease||2004||Copenhagen DK|
|Documentary on fibromyalgia||Information, guidance||2005|
|Fibromyalgia symposium with international scientific participants||Presentation of Research results||April 2006||Rigshospi-talet DK|
|Relaunching of website www.fibromyalgi.dk||Information, guidance, promotion of interests||2008||Copenhagen DK|
|IASP conference||Gathering infomation||August 2008||Glasgow UK|
|New documentary on fibromyalgia||Information, guidance||2009|
|Coping strategy seminars for relatives and friends of members||How to live with and support fibromyalgia patinets||2012||Copenhagen DK|
|Booklet for family of patients with fibromyalgia||To give information to families of patients with fibromyalgia||2012|
|Booklet on fibromyalgia and stress||information of coping with stress||2012|
|Booklet on fibromaylgia and pregnancy||information of coping with pregnancy as a fibromyalgia patient||20122|
|New line of leaflets produced||Information for patients with fibromyalgia||2013||Copenhagen DK|
|IEFIC Conference||Gathering information||2013||Florence ITA|
|Start of a new patient education program||How to live with the disease - networking, exchange of ideas||Jan. 2014||Copenhagen DK|
|Nordic conference||Gathering information exchange of ideas||March 2014||Gothenburg SWE|
|Renewal of the website www.fibromyalgi.dk||Information, guidance, contacts, promotion of interests||third quarter 2014|
|Coping strategy seminars for members||How to manage the disease||Monthly||Different locations nationwide|
|Coping strategy for relatives and friends of members||How to live with and support fibromyalgia patients||Monthly||Different locations nationwide|
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