Doc. MUDr. Jan Příborský, CSc., rok 2004

Publikováno dne 17. Červen 2009.

EpiStop byl v České republice založen v lednu 1995, kdy se původní pracovní skupina (doc. MUDr. Vladimír Komárek, MUDr. Jiří Dolanský, prof. MUDr. Pavel Mareš) změnila v tým specialistů širokého záběru pokrývající problematiku epilepsie nejen z lékařského pohledu, včetně epileptochirurgie, ale i psychologie či práva, volby povolání a společenského uplatnění.

MUDr. Jana Zárubová, rok 2004 a rozhovor pro rádio Impuls, rok 2008

Publikováno dne 17. Červen 2009.

EpiStop – název pro pracovní skupinu, jejímž hlavním cílem od jejího vzniku bylo a je zlepšit život lidí s epilepsií. Na začátku byl geniální nápad doc. Komárka vytvořit dobrovolnou skupinu lidí, lékařů, pacientů, novinářů, právníků a dalších zainteresovaných, kteří budou řešit problémy lidí s epilepsií, hledat cesty, které zlepší stávající situaci. Tato aktivita tehdy ve svých začátcích našla finanční, organizační, realizační podporu u vzdělávacího centra firmy GSK, Mediforum. Během další činnosti EpiStopu se hlavním hnacím motorem aktivit stal s obdivuhodným osobním nasazením Dr. Dolanský, který vždy našel čas, energii, nápady, co by se mělo udělat dál. Vznikl tak zcela výjimečný funkční celek, jediná platforma, kde se skutečně reálně setkávají lékaři a pacienti, řada dalších zainteresovaných. Z mého pohledu je EpiStop jediným společenstvím, které i díky úžasně citlivé koordinaci jednotlivých participantů Kateřinou Koubkovou, skutečně reálně změnilo řadu věcí omezujících život lidí s epilepsií u nás. Byly vytvořeny a vydány minimální diagnostické a terapeutické standardy, při jejichž tvorbě se v diskusích tříbily i názory epileptologů na jednotlivé kapitoly. Vznikla linka pomoci, webové stránky. Díky aktivitě EpiStopu se začaly měnit legislativní omezení týkající se řidičských oprávnění, lázní, invalidních důchodů. EpiStop udělal obrovský kus práce na poli zlepšení informovanosti společnosti o problematice epilepsie.Aktivita EpiStopu byla a je výjimečná a je to opakovaně možné vnímat i při prezentacích výsledků jeho činnosti ať před odbornou lékařskou nebo před laickou veřejností.

Rozhovor s MUDr. Janou Zárubovou na rádiu Impuls ze dne 20.7. 2008.

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EpiStop articles, English version

Publikováno dne 17. Červen 2009.

ARTICLES

The ”EpiStop” Association

Article I.
NAME OF THE ASSOCIATION

NAME OF THE ASSOCIATION:
The ”EpiStop” Association

Article II.
SEAT OF THE ASSOCIATION

Contact Person:
Ms. Jana Zárubová, M.D.
Dept. of Neurology, Postgraduate Medical School, Thomayer’s Teaching Hospital
Videnska 800, Prague 4 – 140 59, Czech Republic

Article III.
GOAL OF THE ASSOCIATION
 
1. The association goal is to create a platform for meeting, cooperation and activities of all groups and persons related to people with epilepsy (patients, patient groups’ representatives, healthcare professionals, expert associations, social workers, state administrative officers, media representatives) in order to improve these people position in the society.

2. The association activities will be concentrated mainly on the following areas:

2.1  Social-legal area

 2.1.1 employment and social problems of people with epilepsy
2.1.2 expert analysis and proposals of legal regulations concerning the people with epilepsy (e.g. driver licenses,, disability pensions, spa, etc.), dissemination of information about new regulations.

2.2                Healthcare area

2.2.1 improvement of healthcare standards at all levels – education and influencing of different healthcare professional groups (in cooperation with expert associations as well as healthcare education institutions)
2.2.2 education of patients with epilepsy, person caring for them and general public

Article III.
THE ASSOCIATION MEMBERSHIP

1. The association member can be physical and legal persons that satisfy the membership conditions defined in the association articles.

2. There are two different types of membership: active membership (with voting right) and passive membership (without voting right).

2.1 Active Membership
2.1.1 The first active members are founders of the association:

Mr. Petr MARUSIČ, M.D., PhD.
 Ms. Jana ZÁRUBOVÁ, M.D. 
 Ms. Kateřina KOUBKOVÁ

2.1.2 The Member Meeting has to approve the registration of a new active member based on the written application.
2.1.3 The active member has right to participate in the Member Meeting sessions and to vote in them.
2.1.4 The active member can be elected in the association bodies.
2.1.5 The active member has right to submit proposals and complaints to the association bodies and to require their answer.

2.2 Passive Membership
2.2.1 The Board has to approve the registration of a new passive member based on the written application.
2.2.2 The passive member has right to participate in the Member Meeting sessions and to propose decisions but he does not have the voting right.
2.2.3 The passive member has right to submit proposals and complaints to the association bodies and to require their answer.

3. The Board records the list of the association members. The Board issues the certification of membership based on the member’s request.

4. Membership is annulled by the member resignation in the written announcement to the Board or by member’s death, cancellation of membership by the Member Meeting decision, cancellation of the association.

5. Member has the following obligations, particularly:
  a) to observe the association articles,
  b) to help to fulfil the association goals,
  c) to execute thoroughly duties and tasks in the association bodies,
  d) to avoid damaging the association interests and reputation.

Article IV.
BODIES OF THE ASSOCIATION

1. Member Meeting
2. Board
3. Other bodies and commissions of the association

1. Member Meeting

1.2 Member Meeting
1.2.1 The Member Meeting is the head body of the association.
1.2.2 The Member Meeting includes all members of the association. Only active members have the voting right in the Member Meeting sessions.
1.2.3 The Member Meeting shall be convened at least once a year.
1.2.4 The Member Meeting, particularly:
a) approves the changes of the association articles;
b)  defines and approves the conception of the association activity for the next period; negotiates and approves main activities of the association;
c)  approves the association annual report, budget and annual balance of account;
d)  approves the association internal documents (e.g. account statements, the association financial management documents, etc.);
e) elects and recalls the Board members;
f) defines a number of the Board members;
g) discusses and approves the registration of a new active member;
h) discusses and approves the cancellation of membership;
i) discusses and approves the establishment of a new body of the association;
j) discusses and approves the cancellation of the association established body
k) discusses and approves the cancellation of the association;
l) approves the merge with other association;
m) discusses and approves other questions and problems defined by the association articles or by the Member Meeting decision.

1.3 The Member Meeting voting and negotiations
1.3.1 Each active member has one vote. Votes of all active members are equal.
1.3.2 The Member Meeting has the competence to take decision in the presence of the majority of active members.
1.3.3 The Member Meeting takes decisions by the majority of present active members, except of voting on Article 1.2.4 a), i) and j) when the majority of all active members is needed and Article 1.2.4 k) and l) when the majority of 2/3 votes of all active members is needed.
1.3.4 The Member Meeting session is presided by the Board chairman or the Board vice-chairman or by an active member elected by the Member Meeting.

2. Board
 
2.1 The Board is the executive body of the association and it is responsible for its activities to the Member Meeting. The Board manages the association activities in the period between the Member Meeting sessions.
2.2 The Board membership originates by the Member Meeting decision based on the proposal of any of its members. The Board has 3 members.
The first Board members are:
 The Board Chairman  Ms. Jana ZÁRUBOVÁ, M.D.
 The Board Vice-Chairman  Mr. Petr MARUSIČ, M.D., PhD.
 The Board Member   Ms. Kateřina KOUBKOVÁ
2.3 The Board Chairman, in case of his absence the Board Vice-Chairman convenes the Board at least twice a year.
2.4 The Board membership ends by the Member Meeting recall or by the written resignation delivered to the Board.
2.5 The Board, particularly:
a) elects its chairman and vice-chairman from its members;
b) coordinates the association activities;
c) convenes the Member Meeting at least once a year;
d) is bound to convene the Member Meeting in 15 days if at least three active members require it in written form;
e) prepares and processes data and documents for the Member Meeting decisions;
f) manages the association financial transactions and other assets according to the approved budget and the activity plan;
g) approves the registration of a new passive member;
h) issues the certification of the association membership;
i) decides other questions and problems defined by the association articles or by the Member Meeting decision.
2.6 The Board has the competence to take decision in the presence of the majority of all its members. The board takes decisions by the majority of its present members.

3. Other bodies and commissions of the association

The Member Meeting or the Board has the competence to establish other bodies or commissions of the association.

Article V.
ACTING ON BEHALF OF THE ASSOCIATION

The Board chairman along with another Board member or the Board vice-chairman along with another Board member are entitled to act on behalf of the association.

Article V.
FINANCIAL MANAGEMENT PRINCIPLES

1. The association assets are its ownership, sources of its income are as follows:

a) donations;
b) grants;
c) subventions;
d) contributions of state as well as regional authorities;
e) contributions of physical and legal persons;
f) voluntary member contributions;
g) other legal sources.

2. Expense include costs of the association activities executed according to the association articles and also costs of activities approved by the Member Meeting decision.

3. Financial transactions and accounts have to be recorded pursuant to valid legal regulations.

4. All financial and assets transactions must be approved by the Board. All financial and assets transactions over 500.000 CZK must be approved by the Member Meeting.

Article VI.
CANCELLATION OF THE ASSOCIATION

1. The association can cease to exist by the Member Meeting decision on the association cancellation or by the merge with other association or by the Interior Ministry decision on the association cancellation.

2. In case of the association cancellation, except of the merge with other association, financial settlement has to be done pursuant valid legal regulations as in case of the cancellation of partnership.

EpiStop na Celostátní poradě ředitelů Úřadů práce

Publikováno dne 30. Září 2008.