of the Association called
"Federation of Rare Diseases Patients in Central andEastern Europe"
CHAPTER I
General provisions
§ 1
- The Association's name is Federation of Rare Diseases Patients in Central andEastern Europe, hereinafter referred to as the Association,
- The Association uses the following names in its international contacts,
- in the Polish language:
Federacja Pacjentów Chorób Rzadkich w Europie Centralnej i Wschodniej - in the English language:
Federation of Rare Diseases Patients in Central andEastern Europe - in the Russian language:
Федерация Пациентов с Редкими Заболеваниями из Центральной и Восточной Европы.
§ 2
Territorial area of the Association activity is territory of the Republic of Poland and Central and Eastern Europe.
§ 3
The registered office of the Association is Głosków.
§ 4
The Association is an ordinary association within the meaning of the Act – Law on associations
§ 5
- The Association may be a member of international organisations provided that the said membership does not infringe obligations resulting from international agreements to which the Republic of Poland is a party.
- The Association may not:
- establish local organisational units,
- join association unions,
- accept legal persons as its members,
- perform economic activities,
- accept donations, inheritances and bequests nor receive subsidies and benefit from the public charity.
§ 6
The Association is established for an indefinite period of time. The Association acts in accordance with the regulations of the Act of 7 April 1989 – Law on associations (consolidated text published in Journal of Laws of 2001, no. 79, item 855, as amended) and provisions of these Rules.
CHAPTER II
Objectives of the Association and methods of their accomplishment
§ 7
The Association's objective is to act in favour of improving the quality of life of the mucopolysaccharidosis and rare diseases patients, diagnostics of rare diseases, highly specialised medical care, availability of orphan drugs and appropriate social care for persons suffering from rare genetic diseases.
§ 8
The Association pursues its objectives through:
- dissemination of knowledge on mucopolysaccharidosis and rare diseases,
- establishing cooperation with rare diseases patients in Central and Eastern Europe,
- dissemination of knowledge on rare diseases and orphan drugs among the society,
- collecting and dissemination of data concerning legislation and legal regulations on orphan drugs,
- organisation of meetings, lectures and talks, as well as other events aimed at informing about methods of treatment and available drugs,
- distribution of leaflets and bulletins informing about developed drugs, as well as research activities on new ones,
- cooperation with persons and institutions pursuing similar objectives,
- maintenance of the Association website,
- supporting activities aimed at initiating and continuation of research an tests with respect to the existing and new drugs,
- contacts with public institutions regarding legislation and legal regulations in the area of orphan drugs,
- initiating and organisation of mutual support in pursuing normal functioning of the patients in the society,
- actions aimed at the health protection and promotion, as well as providing care and legal protection for those persons,
- promoting improvement of the quality of medical services and new methods of treatment of rare diseases,
- increasing the scope of financing the treatment of patients in Central and Eastern Europe,
- cooperation with central and local authorities and state administration bodies, health care units, economic operators, as well as social, religious and youth organisations, etc, both domestic and foreign ones, in order to ensure that a given state provides treatment and specialist medical care to rare diseases patients,
- carrying out a campaign, via mass media and the organisation's own publications, whose aim is to increase level of social awareness, to shape appropriate attitude towards the MPS and rare diseases patients,
- organisation of seminars, conferences, scientific research and trainings concerning any achievements of the world and domestic medicine in the area of prevention, diagnostics and treatment of genetic disorders, in particular metabolic errors,
- preparation or training materials improving the quality of medical services (training movies, multimedia presentations, content-related materials),
- popularisation of the Association activities and objectives,
- organising annual training and information meetings of the Association members.
CHAPTER III
Principles of the Association membership
§ 9
The Association member may be any natural person who:
- accepts objectives and methods of the Association activities and intends to effectively contribute to their accomplishment, and who files a written declaration of membership accepted by majority of existing members,
- whose membership candidacy has been supported by two introducing persons out of the existing members of the Association.
§ 10
The Association may be joined by foreigners without permanent place of residence in the territory of the Republic of Poland.
§ 11
The Association members are obliged to:
- observe resolutions adopted by the Association,
- actively participate in the accomplishment of the Association tasks,
- observe social rules and organisational discipline of the Association, while showing a proper moral and ethical attitude.
§ 12
Members of the Association take part in the activities of the Association in person or through the agency of their representatives.
CHAPTER IV
Final provisions
§ 13
- The Association collects funds for its activities from the membership fees which are paid on a voluntary basis and in a discretionary amount.
- The Association's activities are based upon voluntary work of its members.
§ 14
The Association may be dissolved via resolution adopted by the Association members. In order to be valid, the resolution on the Association dissolution must be adopted by majority of 2/3 of its members in the presence of at least half of the Association members entitled to vote.
§ 15
- Ms Teresa Matulka is a representative authorised torepresent the Association.
- The representative shall also represent the Association in its external contacts.
§ 16
These Rules enter into force on the day of their adoption.