France
Fibromyalgie France Street: 11, avenue de la Soeur Rosalie District: 75013 Paris Country: France Phone: 0033 0143314702 E-mail: fibromyalgie.france@wanadoo.fr Website: http://fibromyalgie-france.org |
Board members:
| President name: Carole S. Robert Secretary: Brigitte Gabin Treasurer: Jean Gabaud Adjunct Secretary: Serge Robert |
History:
Fibromyalgie France - Ufaf was founded in 2001. At first, the association was regional. Carole Robert, the president, proposed that a national association be created in order to be able to communicate officially with the French Institutions and the national medias. More precisely, meetings were arranged with the Ministry of Health and the Ministry of Work in France in order to raise awareness about the reality of a fibromyalgia patient's daily life.
Objectives
- Raise awareness concerning fibromyalgia and its consequences on family, social and professional daily life.
- Create and develop all forms of research, mutual assistance, information and claims.
- Contribute to raising awareness on medical or social issues.
- Be the spokesmen for institutions and national medias.
Achievements, Activities and Events:
Before 2008
| Activity name | Objectives | Date | Venue |
| Publication of the book "Fibromyalgia the patients want to understand" | General knowledge of fibromyalgia by the French population | 2003 | France |
| Participation in the creation of a public file concerning fibromyalgia | Knowledge of fibromyalgia syndrome for patients, their families and their doctors | 2006 | France |
| Acknowledgement of fibromyalgia by the | Obtaining recommendations for the management of | 2007 | France |
| National Academy of Medicine | fibromyalgia | ||
| Open letter to the French president | Knowledge of fibromyalgia and our actions from institutions and medias, on a national, regional and local level. | 2007 | France |
In 2008
| Activity name | Objectives | Date | Venue |
| 1st European Fibromyalgia round table discussion at the European Parliament | Raising awareness at the European Level | 7th May 08 | Brussels, Belgium |
| International Fibromyalgia Day | Raising awareness! | 12th May 08 | Paris |
| EULAR (European League Against Rheumatism): Intervention | International press event and symposium | 12th June 08 | Paris |
| Publication of the book "Fibromyalgia such a long way for the patients" | Partnership between doctors and patients | Sept 08 | France and Europe |
Future activities
| Activity name | Objectives | Date | Venue |
| Fibromyalgia International Day 2009 | Raising awareness! | May 2009 | France |
| Participation in taking charge of fibromyalgia patients in a medical center | Improvement of the Chronic Illness patients' quality of life | Sept 2009 | France |
Expectations from the Network
We expect the net to become a link between the European associations and the European parliaments. It will also be a leader for the fibromyalgia cause in Europe and the world.
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.