The Netherlands

 

Fibromyalgie en Samenleving F.E.S.

Nationale vereniging Voor fibromyalgie-Patienten  

Street: Noordse Bosje 16
District: 1211 BG  Hilversum
Country: Nederland
Tel: +31356220612
Fax: 
E-Mail: fes@fesinfo.nl
Website: www.fesinfo.nl

 

Board members:

President name: Johanna Boogerd - Quaak
Secretary: Janneke Knobhout
Treasurer: Maarten Splinter
Member: Yvette Moerdijk
Member: Bram Tack

Managing director; Ingeborg Audier
         

 

 

 

History:

The F.E.S. was founded in 1986 in the northern part of The Netherlands. The main reason for this was the lack of awareness for fibromyalgia. In a reasonably short period of time the association started to grow and is becoming one of the largest specific patient associations of The Netherlands. The aim of the founders, to create an association where fibromyalgia patients could tell their story and learn from each other, has succeeded. Now-a-days the organization spends time and money on; fellow-sufferer contacts , information and guidance and promotion of awareness.

Objectives:

Awareness for the causes and consequences of the rheumatic disease fibromyalgia in society. To come to that goal we have three main objectives which are split up in different areas.

 

  • Fellow-sufferer contacts like coffee mornings or telephone contact etc.
  • Information and guidance like the FES Magazine, lectures, brochures, events and the website.
  • Promotion of awareness like participation in umbrella organizations, health insurance companies, other rheumatic diseases organizations, attending conferences etc.

 

Achievements, Activities and Events:

Before 2008

 

Activity name Objectives Date Venue
Presentation of the organizations book about fibromyalgia; "FIBROMYALGIA- Invisible pain" Information and guidance 26th October 1991 Bunnik, The Netherlands
Presentation of the total refreshed website Information, guidance, contacts, promotion of interest 2001  
International Jubilee Congress Fibromyalgia = Multidisciplinary Raising awareness from health professionals 12th of May 2006 Veldhoven, The Netherlands
Regional Activity Day Information, guidance and promotion of interest 3th of February
       9th of June
       22th of September
       23th of November
Putten
       Assen
       Alphen a/d Rijn
       Breda, The Netherlands

In 2008

 

Activity name Objectives Date Venue
1st European World Fibromyalgia Day 2008 Raising awareness at the European Level 7th of May 08 Brussels, Belgium
Press Event during EULAR conference Raining awareness 12th of June Paris, France

Future activities

 

Activity name Objectives Date Venue
Implementation of multidisciplinary programs trough out The Netherlands for first and second line of health care Improvement of quality of live for Fibromyalgia patients in The Netherlands Starting 2009 till ??? The Netherlands
Symposium about awareness in The Netherlands Raising awareness by politicians and health professionals March 2009 Amersfoort, The Netherlands

Expectations from the Network

From ENFA we expect a leading role of achieving awareness on the European level with politicians and health professionals. Second we expect ENFA to play a role in achieving fundamental research at European level supported by the European Union about the causes of fibromyalgia. And third we expect ENFA to support European countries who want to start their own national patient organizations.

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Contact

E-mail : contact@enfa-europe.eu