Denmark

Danish Fibromyalgia Organisation


Street: Vesterbrogade 14 st.th
District: 1620 Copenhagen V
Country: Denmark
Tel: 3323 5560
Fax: 3323 5561
E-Mail: dff@fibromyalgi.dk
Website: www.fibromyalgi.dk

Board members:

President: Anne Bendixen
Vice President: Aase H. Venegas
Secretary:
Treasurer: Bente Stisen
Members: Elsebeth Lorup-Hoff, Dorthe Krauch Harboe, Else Hansen, Vibeke Mortensen, Heid Povlsen, Conny Pedersen, Else Hansen, Christian Larsen
Other: Social policy advisor Merete Hornecker, Administrator Niels Busk
 

 

History:

The Danish Fibromyalgia Association was founded in 1991 by a group of fibromyalgia patients. The association is volunteer-driven with programme and policy decisions made by the members of the board. An administrator and a social policy worker are hired to lend support to 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 programs and lectures. Our magazine is published quarterly. We have 3.300 members

Objectives:

To support, guide and enlighten our members, relatives and others
To forward knowledge and raise awareness about fibromyalgia
To work for the recognition of fibromyalgia as equal to other chronic diseases
To support serious research, gather and forward scientific results and co-operate with relevant scientists and research facilities
To co-operate with similar organisations
To help the fibromyalgia patients lead as active a life as possible despite the limitations the disease presents
To further the above mentioned purposes, we have gained membership of the Myopain Association, the IASP 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 2008

Activity name Objectives Date Venue
Magazine fibromyalgi.dk Information, guidance, education 1991 Membersquarterly
New website www.fibromyalgi.dk Coping strategy courses for members Information, guidance, promotion of interests 2004
Coping strategy courses for members How to manage the disease 2004
Film about fibromyalgia Information, guidance 2005
Fibromyalgia symposium with international scientific participants Presentation of Research results April 2006 Rigshospi-talet DK

In 2008

Activity name Objectives Date Venue
Presentation of the totally refreshed website www.fibromyalgi.dk Information, research, guidance, contacts, promotion of interest 12 may 2008
Start of a new patient education program How to manage the disease - Longer program Autumn 2008
IASP Conference Gathering information August 2008 Glasgow UK

Future activities

Activity name Objectives Date Venue
New film about Fibromyalgia Information, guidance, contacts 2009

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

Activities