Slovenia

Društvo za fibromialgijo

       


Street: Celovška cesta 160
District: 1000 Ljubljana
Country: Slovenija
Tel: +386 749 64 179  or  +386 41 464 677
Fax: ______________________________________
E-Mail: drustvofm@gmail.com
Website: http://www.skufmslovenija.org/

Board members:
President: Veronika Felicijan
Vice President: Damjana Znidarsic-Svegelj

Vice president: Natasa Barlic-Dermastja
Secretary: Franc Cas
Treasurer: Slavica Žgajner 
Member ENFAMateja Kržan 

Member: Bojana Jug-ZuriIngeborg   

Member: Brigita Ninkovic

Member: Tone Mlakar 
Member: Ingeborg Cas  
Member: Eva Rebrica 

 Me

History:
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.

Objectives:
    - 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:

Before 2010

Activity name Objectives Date Venue
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
Slovenia
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
Slovenia
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

In 2010

Activity name Objectives Date Venue
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
      Velenje
Slovenia
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.
May
Sept.
Ljubljana
     Laško
Become ENFA member To obtain credibility and achieve broader objectives June EU

Future activities

Activity name Objectives Date Venue
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.

Facebook

Stay updated on facebook and become a fan of our page. You will updated from time to time about our activities.

Donate

You can do this by making a donation with PayPal. To do this just click on the "donate" button and follow the instructions.

Contact

E-mail : contact@enfa-europe.eu