Društvo za fibromialgijo
President: Robert Belentin
Vice President: Robert Sotler
Vice president: Tatjana Knupleš Mlinarič
Secretary: Kristina Nose
Treasurer: Anica Filipič
Member ENFA: Mateja Kržan
Member: Brigita Ninković
Member: Bojana Jug-Žurič
Member: Nevja Birsa
Member: Marjana Ahačič
Member: Irena Hribar
Member: Marjana Šoba
The association was founded in 2004, with its headquarters located in Ljubljana. It was (and still is) the first and the only registered national organization in Slovenia, which brings together patients with fibromyalgia and chronic fatigue syndrome on a national level.
In the past knowledge of both diseases was scarce both in the general public as well as professionals. The aim and purpose of bringing together patients, was to provide mutual help, support and exchange of experiences among patients, raise awareness of professionals and the general public about the two diseases and at the same time cooperate with the medical institutions in order to improve the therapeutic treatment of patients and ensure protection and exercise of patients’ social rights.
- To improve the quality of patients’ lives;
- To provide mutual help, support and promote sharing of experiences among patients;
- To educate and provide information to patients and their relatives;
- To fight against the distrust surrounding fibromyalgia in the general public and professionals;
- To raise awareness of this condition, both in professionals and the general public;
- To promote cooperation with medical institutions in order to provide appropriate treatment of patients suffering from this condition;
- To ensure protection of the social rights of patients;
- To promote regional self-help programmes;
- To promote and enhance cooperation with similar associations
- To provide research assistance.
Achievements, Activities and Events:
|MP’s letter to the Minister of health (twice)||To receive a formal response on the status and situation of the FM disease in the country||Dec. 2003 Febr. 2006||Ljubljana
|Society website and online counselling through a public health portal||Providing information, guidance, contacts, motivation, promotion of interest …||From 2004 onwards||Slovenia|
|Survey of patients on disease incidence||Obtain better understanding of the problems of the patients||2005||Slovenia|
|A brochure describing the disease||Raising awareness and helping the patients||2005||Brežice
|Articles and interviews with our patients in printed media, TV, radio …||Provide help to patients and raising public awareness||From 2004 till 2009||Slovenia|
|A book on FM written by a patient||Provide help to patients and raise public awareness||2008||Maribor Slovenia|
|Minister of Health – grants status for an association acting in the public interest||To obtain credibility and recognition of the right to certain public funds||2008||Ljubljana Slovenia|
|Slide on FM||Mark the FM Awareness Day. To see the Slide Show||2009||Slovenia|
|New information material||Raising awareness||March 2010||Slovenia|
|Mark the World Health Day||Raising awareness||April||Slovenia|
|Participation in a radio and TV show on FM||Provide help to patients and raise public awareness||February April||Jesenice
|FM Awareness Day||Raising awareness||May||Slovenia|
|An interview with president – a detailed article in national medical journal||Provide help to patients and raise public awareness||May||Slovenia|
|Health lectures and workshops for patients and relatives||To provide education of patients and relatives. Support in coping with the disease.||Febr.
|Become ENFA member||To obtain credibility and achieve broader objectives||June||EU|
|Further cooperation with the medical institutions||Creating guidelines, unified approach to treat patients with FM in the country; We will also strive to achieve the opening of a specialized clinic dedicated to multidisciplinary treatment of FM in the country.||In the future||Slovenia|
|Cooperation with foreign countries.||Share positive experiences between countries.|
Expectations from the Network
We are confident that together we can be stronger in achieving our common objectives in relation to the identification and recognition of the disease, diagnostic criteria, therapeutic treatment and enforcement of social rights of patients.
The European Network of Fibromyalgia Associations also plays an important role in achieving the following objectives: 1. to provide scientific research in this area; 2. to share positive experiences between countries; 3. to obtain the participation of as many European countries and promote national awareness even in other countries, where no such organized societies exist or these are not yet members of ENFA.