Denmark

Danish Fibromyalgia Organisation

Street: Lergravsvej 53
District: 2300 Kobenhavn
Country: Denmar
Tel:  +45 3323 5560
Fax: +45 3323 5561
E-Mail: dff@fibromyalgi.dk
Website: www.fibromyalgi.dk

 

Board members:

 

President: Søren Harboe
Vice President: Sif Holst
Secretary:Judy Olsen
Treasurer: Merete Hornecker
Members:  Else Hansen, Bente Stisen, Stine Bundgaard, Berit Høgsted-Nielsen
 

 

History:

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

Objectives:

  • 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:

Before 2013

 

Activity name Objectives Date Venue
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  

In 2013

 

Activity name Objectives Date Venue
New line of leaflets produced Information for patients with fibromyalgia 2013 Copenhagen DK 
IEFIC Conference Gathering information 2013 Florence ITA

In 2014

 

Activity name Objectives Date Venue
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

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Contact

E-mail : contact@enfa-europe.eu