United Kingdom
Fibromyalgia Association UK Street: PO BOX 206 District: Stourbridge, West Midlands, DY9 8YL Country: United Kingdom Tel: +1384 895002 Fax: +1384 895005 E-Mail: head.office@fmauk.org Website: www.fmauk.org |
Board members:
| President: Pam Stewart Secretary: Janet Horton Treasurer: Member: Gerry Crossley Member: Des Quinn |
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History:
Fibromyalgia Association UK was first established in 1992 to provide information to people with fibromyalgia. In 1997 it began working also with the 40 support groups around the country providing free information leaflets and books for sale. There are now over 120 support groups working with FMA UK and a network of regional coordinators who help set up new groups and arrange regional events such as meetings and conferences. We have also held national and regional conferences with international speakers for both people with fibromyalgia and medical professionals. Currently we supply information through our website, monthly magazine and professional and patient booklets. We have a national helpline for general enquiries about fibromyalgia and one specifically for benefit queries. The All Party Parliamentary Group on Fibromyalgia was formed in 2001 and holds regular meetings to inform MPs of the problems surrounding fibromyalgia and possible solutions. Our Medical Advisory Board is comprised of expert medical professionals in various disciplines who provide information for our publications and specific queries. The charity is mostly run by volunteers without whom we would not be able to provide the level of service we do.
Objectives
- To make people aware of fibromyalgia and its affects: to the public at large and to the health professionals that are responsible for diagnosing and treating people with the condition.
- To support people with fibromyalgia through contact with support groups and others with the condition.
- To lobby for more effective, available treatment.
Achievements, Activities and Events:
Before 2008
| Activity name | Objectives | Date | Venue |
| Leaflet produced | Information and guidance | 1992 | Stockport UK |
| Registered as charity | Official recognition | 1994 | |
| Benefit helpline | Provide specific support for benefit queries. | 1995 | Chorley UK |
| National meeting(since held annually around the UK) | To bring support groups together | 1996 | Stourbridge |
| Magazine produced | To provide information | Stourbridge | |
| First national conference | Raise awareness | 1998 | Harrogate |
| Website launched | Reaching a wider audience | 2000 | Stourbridge |
| Attendance at fibromyalgia conference | Networking, information gathering | 2000 | Los Angeles |
| UK national conference | Raising awareness and recent updates in knowledge | 2000 | Bournemouth |
| All Party Parliamentary Group formed | Raise awareness amongst MPs | 2001 | House of Commons London |
| National Helpline established | To enable calls to be taken by volunteers outside of the office | 2001 | Throughout the UK |
| UK national conference | Raising awareness and recent updates in knowledge | 2002 | Harrogate |
| Medical Advisory Board | To provide panel with expert knowledge | 2003 | Throughout the UK |
| GP information leaflet | Provide information for all GPs in diagnosing fibromyalgia | 2003 | Thoughout the UK |
| Information pack for new groups | To provide information and guidance to people wanting to start a support group | 2003 | Throughout the UK |
| UK national conference | Raising awareness and recent updates in knowledge | 2004 | Imperial College London |
| Medical professionals managing fibromyalgia booklet | Provide information to medical professional about diagnosis and treatment | 2004 | Throughout UK |
| Stand at professional conference (Annually) | To inform medical professionals about diagnosis and treatment of fibromyalgia | 2005 | NEC Birmingham |
| Volunteer awards(annually) | To recognize the vital contribution made by volunteers | 2005 | Stourbridge |
| Regional conference | Raising awareness and recent updates in knowledge | 2006 | Hull |
| New information booklet produced | Provide a professional quality publication | 2006 | Stourbridge |
| Regional conference | Raising awareness and recent updates in knowledge | 2007 | Liverpool |
| Myopain and Leaders Against Pain meeting | Updating on recent research, advocacy workshops | 2007 | Washington USA |
| EULAR meeting | Updating on recent research | 2007 | Barcelona |
| Joined ARMA | To add the fibromyalgia perspective to this network | 2007 | UK |
In 2008
| British Rheumatology Society Conference | Raise awareness amongst medical professionals within the rheumatology field | 23rd -25th April | Liverpool |
| 1st European World Fibromyalgia Day 2008 | Raising awareness at the European Level | 7th of May 08 | Brussels, Belgium |
| Coffee Morning for MPs | Raise awareness amongst MPS | 12th May 08 | Portcullis House London |
| Group leaders' meeting | Improve awareness raising | 6th June 08 | City Hospital Nottingham |
| Attended International Leaders Against Pain | Network with other organisations and improve awareness technique through workshop sessions | 11 – 14 August 2008 | Washington DC |
| Awareness Week | For support groups around the UK to raise awareness through coffee mornings and other local events | 6th – 12th September 2008 | various |
In 2009
| Activity name | Objectives | Date | Venue |
| All Party Parliamentary Group on Fibromyalgia | To raise awareness amongst MPs of the problems faced by people with fibromyalgia | 10th February 2009 | House of Commons |
| Young people’s booklet produced | To give information to young people with coping strategies. | March 2009 | |
| British Society of Rheumatology conference | To raise awareness of treatment for fibromyalgia among the rheumatology team | 28th -29th April 2009 | Glasgow |
| International Awareness Day | To raise awareness amongst the general public | 12th May 2009 | various |
| Group Leaders meeting | For group leaders to discuss best practice with FMA UK and network | 6th June 2009 |
Stourbridge |
| Awareness week | To raise awareness of fibromyalgia amongst the general public | 7th – 13th September | various |
| NW Conference | Information for people with fibromyalgia and professionals | 12th September 2009 | Arrowe Park Hospital Merseyside |
Expectations from the Network
By working together we hope to have a greater voice in Europe to bring about the recognition needed to improve diagnosis and treatment of fibromyalgia. To enable this by organizing and coordinating events to raise awareness throughout Europe.
Activities
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10-01-2010: Myopain conference
October first till October 3th the Myopain conference will be held in Toledo Spain. ENFA will folow this and discuss the outcome in their anual meeting in La Coruna of October 8th
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10-08-2010: Coruna Meeting
General meeting of ENFA in A Coruna, Spain
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10-09-2010: 1 European Forum of Fibromyalgia
From October 8th till October 10th ENFA member ACOFIFA will organize the First European Forum of Fibromyalgia in A Coruna, Spain
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10-14-2010: Annual meeting F.E.S.
On October 14th the Dutch Fibromyalgia association F.E.S. wil have there annual general meeting. On that meeting they will speak about the plans for the upcoming years. Afterwards there will be a special event for the volunteers in order to thank them for there work during the year. More information can be found on the website of the Dutch fibromyalgia association after the summer holidays. This website can be found by the participants.

Street: PO BOX 206 