Fibromyalgie en Samenleving F.E.S.
Nationale vereniging Voor fibromyalgie-Patienten
President name: Johanna Boogerd – Quaak
Secretary: Janneke Knobhout
Treasurer: Maarten Splinter
Member: Yvette Moerdijk
Member: Bram Tack
Managing director; Ingeborg Audier
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.
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:
|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
Alphen a/d Rijn
Breda, The Netherlands
|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|
|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.