About FMA UK
- Category: Documentation
- Published on Monday, 05 September 2005 00:00
- Hits: 77028
We aim to encourage NHS and other funding sources for new research projects. At present there is very little research being carried out in the UK and sufferers are told there is no cure. We hope that will be a statement of the past.
To improve the lives of people with fibromyalgia by increasing awareness of the condition throughout the UK and elsewhere, and improve the awareness of, and access to treatments for fibromyalgia.
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 150 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. The charity is mostly run by volunteers without whom we would not be able to provide the level of service we do. On the 1st July 2015 FMA UK and Fibroaction merged to produce Fibromyalgia Action UK.
What does FMA UK do
Below is a short list of some of the services or resources that we offer:
- National Helplines on fibromyalgia and benefits issues
- An online support forum that is available 24/7 with office bearers of the charity being available to help e.g. our benefits advisor helps with benefits queries and sends information regularly.
- UK wide system of support groups
- Only fibro charity that helps create and provides resources to support support groups at creation and through their operation
- Providing the insurance cover required for registered fibromyalgia support groups to operate
- Email support system where Regional Coordinators answer questions and refer people to local support
- Signposting to legal support
- Awareness event support including awareness items including posters, leaflets, tshirts and many more items with many being offered free or at cost
- Fundraising support
- Sending of free patient information packs from the office
- Sending medical professional booklets to medical professionals from the charity on behalf of patients.
- Trustees and RCs attending conferences, support groups, medical professional and governmental meetings.
- Supporting regional and national conferences
- We represent fibromyalgia sufferers at various levels and to various organisations. A recent example of this was our response to the Panorama programme.
- Organise and take part in European Activities through ENFA
- Provide medical information for sufferers and medical professionals through its Medical Advisory Board of experts. Our latest booklets include “Young People with Fibromyalgia” and our updated "The Fibromyalgic Pregnancy and Beyond" booklet.
- Update information in other organisation's publications e.g. ARC and BUPA
- Provide information and interviewees to media
- Provide participants for surveys and research projects
- FMA UK sets the date for the UK fibromyalgia awareness week and organises events with groups to raise awareness of our condition
- Organise events for International Awareness day on May 12th. Normally involves an event at Westmister and the the Fibromyalgia APPG.
There are treatments available which can alleviate some of the symptoms but the majority of these are in the private sector and as most sufferers are forced into early retirement, or cannot work at all, the cost of such treatment is prohibitive. More info on fibromyalgia can be found here.
Charity Registration Details
Our Charity Registration number is: 1042582
Our HMRC Reference number is: available on request
Company Registration number is: SC492045
Name & Registered Office:
FIBROMYALGIA ACTION UK LTD
12 SEEDHILL ROAD
3007 MILE END MILL