MUSCULAR DYSTROPHY SOCIETY OF ISTRIA

Dear friends of our pages!

Our intention is to try to inform you and to present you the basic facts about work and activity of our Society.All of you who do not use our Croation language/ spelling,please do stay on our web portal and have a look at our fhotographs which will give you the best insight and tell you more than hundreds of words.

 1.General data about the Society

Trg na mostu 2, 52100 Pula – MB 3159493,

IBAN HR2824070001118015535 - O.T.P. Banka

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Tel/fax: 00385 52 217 242, gsm: 091 538 87 17

 

For foreign exchange transactions from abroad:

2500-3159493-SWIFT..DBZD.HR 2X, OTP-BANKA

Foreign exchange acccount: 2118015539-OTP-BANKA

Registration number of the society: 18000548

Home number of the society: 3159493

Founded: November 11th, 1974

Date and year of registration in the Register of Societies of Republic of

Croatia: May 19th, 1998

President of the Society: Josip Brkljača

Vice-president of the Society: Aurora Kršulj

President of Supervisory Board: Danijel Radolović

Secretary of the Society: Davor Komar

In accordance with the decision made by the Society assembly (the largest body of the Society which is consisted of all the members),there is no membership fee.

The rooms in which the Society works have the size of 69 m2 and they are situated in the very center of Pula,near the Main Post Office of the town.

We are proud to be the owners of a special vehicle altered for transportation of disabled persons in wheelchairs or beds and of a personal car adapted to steering with the built-in hand commands,so that the vehicle can also be driven by persons with disabled lower extremities.

2. Briefly about our diseases

Muscular dystrophy- neuromuscular disorders belong to the top of the worst kind physical defects.

Only the diagnosis of the disease puts us into position to lay claim to professional pension and that fact tells a lot about the difficulty of the disease we are dealing with.

The future of 90 % of our membership is a complete dependence on someone else's care and help.More than two thirds of our members have a 100 % physical defect and the rest a 80 % physical defect.

The disease is negatively progressive,it spreads over the whole body and in the most cases it is genetically hereditary.It is in no case contagious. 

3. The purpose and the scope of activity of the Society

  1. Muscular dystrophy Society of Istria helps,takes care and gathers around itself persons disabled by muscular dystrophy-neuromuscular disorders.
  2. We are registered by the State Administration Office of District of Istria.
  3. We are active over the whole peninsula of Istria-District of Istria.
  4. The Society belongs neither to a political party nor to the government,it is a nonprofitable and an exclusively voluntary-social Society of civil persons.
  5. The work of the Society is based on the voluntary work of good people and this Society couldn't exist without them.
  6. The Organization-Society was founded on the initiative of the persons disabled by muscular dystrophy and similar neuromuscular disorders.
  7. On January 1st 2006 the Society gathers around itself 220 persons from the District of Istria and 94 of them are disabled by the muscular dystrophy-neuromuscular disorders.
  8. The Muscular Dystrophy Society of Istria gives support to its members in order to overcome health,social,family and other problems they deal with.
  9. The Society initiates the members to act at the local level as well as to articulate the problems towards the state level.
  10. The Society is the member of the Union of Muscular Dystrophy Societies of Croatia,the member of the Union of Disabled Persons Societies of the District of Istria and of the Community of Unions of Disabled Persons of Croatia.
  11. According to the Bylaws of the Society the MEMBERS can be:
  • regular MEMBERS,(disabled persons),
  • supporting MEMBERS (parents,guardians,friends,etc.)
  • honorary MEMBERS (persons who,by their work and personality, help and support the Society in a special and unique way).

 4. The goals of foundation of the Society

  • collecting and processing the data related to the persons disabled by muscular dystrophy-neuromuscular disorders in this area and multilateral study of the disabled persons with the goal of solving their problems,
  • following,analysing and dealing with the applications of regulations concerning prevention of disability,especially with persons disabled by muscular dystrophy-neuromuscular disorders,their lives and living conditions,
  • improvement of medical,educational,professional and social rehabilitation and,if possible,employment of disabled persons,
  • helping the members in getting orthopaedic helping devices as well as all the other necessary things,
  • organization of social,cultural,entertaining-recreational and sports activities of the members and their families,
  • keeping a file on persons disabled by muscular dystrophy-neuromuscular disorders with the data concerning disease diagnosis,residance,their social status and all this with the purpose of finding out and solving their problems,
  • stimulating foundation of a consultancy for parents of disabled children and for disabled persons and their families,
  • giving advices related to improvement of measures for early discovery,making diagnosis,observation,rehabilitation and prevention of disability,
  • stimulating additional education of medical workers about the persons disabled by muscular dystrophy-neuromuscular disorders (or accompanying diseases) with the goal of a better treatment of disabled persons during their curing and rehabilitation,
  • stimulating foundation of institutions for development,teaching, education,professional training and social taking care of disabled persons,
  • checking law regulations and suggesting changes and amendments on behalf of disabled persons,their families and guardians,
  • doing public relations activities in order to inform the public about problems of the members of the Society and improvement of lives of persons disabled by muscular dystrophy-neuromuscular disorders,
  • doing publishing activities concerning this scope,
  • cooperation with similar societies at home and abroard,
  • doing other activities being important for the members.

 We wish you a very good time with us and a lot of fun !

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