Article I.    Name

The Association bears the name:

European Association for Rett Syndrome, using the international abbreviation EARS.

It is a non-profit making organisation.

Article II.    Head Office

The Associationís Head Office is in .........................................(to be decided).

The Head Office can only be in a country, which is represented in the European Parliament. The transfer of the Head Office can be decided by
the General Assembly on a basis of a simple majority.

Article III.    Neutrality

The Association is independent of any political, ideological or religious confession.

Article IV.    Aims

The aim of EARS is to represent the interest of families with patients suffering from the Rett Syndrome, especially in the following areas:

1.      To make the Rett Syndrome (better) known by the public, the medical side, care takers and those who are directly concerned in all European countries.

2.      To improve the communication within the European Rett community.

3.      To defend the interests of Rett patients and their families as a representative European organism.

4.      To expand the European Organisation to all European countries and to assist, if necessary, in the creation of a national association.

5.      To promote the scientific research in the field of the Rett Syndrome.

These aims are to be especially attained by:

1.      Co-operation with Rett (parent) Associations within Europe and Worldwide.

2.      Exerting influence on political decisions concerning European legislation in the public health, professional and social fields.

3.      Co-operation with European and other Institutions (EU Commission, European Parliament, Council of Europe, etc.).

4.      Co-operation with other social groups.

Article V.    Membership

a.       Only associations and organisations can be accepted as full members which deal with questions concerning patients suffering from Rett Syndrome and their families, and which have their Head Office in a country represented in the European Parliament. Organisations from a country outside the EU can acquire a status of an associated member or observer.

b.       Persons and organisations established according to the terms of public and private law can be accepted as promoters, on condition that they are prepared to encourage and support the aims and efforts of EARS.

c.       A process of admission is necessary for members and promoters. The Executive Board decides upon admission and date of commencement of membership. It is possible to appeal against this decision. The appeal is decided upon by the General Assembly.

Article VI.    Resignation and Exclusion

1.       A member organisation can leave EARS by declaration of this intention by its executive body. The Executive Board of EARS is to be informed of this resignation in writing before October 1st of any given year. The resignation is valid 12 month from December 31st of the year in which it is tendered.

2.       A promoter can announce his resignation in writing to the Executive Board of EARS at any time. The resignation is valid as of the first day of the following month.

3.       A member association can be excluded from EARS by resolution of the General Assembly if it has, despite two reminders to do so by the treasurer, not paid the membership fees due for the business year, or if it acts against the aims of EARS.

4.       Should reasons for exclusion exist, the Executive Board is empowered to suspend a member association with immediate effect until a corresponding decision is taken by the General Assembly.

5.       A member, who has left or has been excluded from EARS, has no right whatsoever to the property of EARS.

Article VII.    Resources

1.       The resources of EARS consist of:

a.      Membership fees

b.      Promoterís contributions

c.      Public subsidies and private donations

Membership fee is fixed by the Executive Board. The annual amount for members (to be discussed incl. Countries free).

3.       The liability of EARS and its members is limited exclusively to the property of EARS.

Article VIII.    General Assembly

1.       The General Assembly is the highest organ of EARS with the power of decision. It consists of the following voting participants:

a.      The members of the Executive Board

b.      The elected delegates of the member associations

The General Assembly is convoked at least every two years by the Executive Board. The Executive Board decides on date and venue. The announcement and request for motions must be sent to the member associations at the latest 4 weeks before the fixed date. The agenda, motions and the business and the financial report are to be sent to the participants by the Executive Board at least 2 weeks in advance.

3.       An extraordinary General Assembly can be held in cases of urgency at the request of at least one third of the member associations. The invitation is not bound to any period of prior notice.

4.       The Executive Board chairs the General Assembly. The board is elected by the General Assembly for a period of 3 years (first election should be different).

5.       Every full member country is entitled to one vote. Voting by proxy is allowed, whereby one participant is not allowed more than 2 votes.

6.       A quorum is established at the General Assembly when more than half of the votes are represented. Decisions are taken by simple vote. A 2/3 majority of the valid votes is required for the acceptance of, or alteration of the statutes.

7.       The General Assembly is assigned the task of deciding on the directive principles of EARS. It receives the business and financial report of the Executive Board, and decides on the discharge of the Executive Board. Members of the Executive Board are not allowed to vote on their own discharge.

8.       The General Assembly elects the Executive Board and the auditors.

9.       Minutes of the General Assembly must be taken; they are to be signed by the Executive Board members present.

10.    Any costs incurred by delegates for the participation in the General Assembly are to be borne by the association sending the delegates. (Sponsorship for countries??).

Article IX.   
Executive Board

1.       The Executive Board consists of:

a.      1 President

b.      1 Secretary

c.      1 Treasurer

d.      2 Ordinary Members

2.       The Executive Board has to execute the business of EARS according to the law and statutes. Employed workers can be used in the execution of the work. The Executive Board is entitled to decide on the membership of EARS to other organisations.

The president and one other member of the Executive Board represent EARS in and out of court. They assume thereby the position of a legal representative.

A quorum exists when half of the members are present. Decisions are taken on the basis of a simple majority. The president has a casting vote in case of parity of votes. The Executive Board establishes his own constitutional rules.

The Executive Board convokes the General Assembly and establishes his agenda.

3.       The Executive Board should convene when required, but at least once a year.

4.       In case of resignation or exclusion of a member, the Executive Board is entitled to designate a new member. It is empowered to recall any member who has failed three times in to attend a meeting without convincing reasons. A substitute is to be elected for the recalled member.

Article X.   

1.       EARS has 2 auditors.

2.       Audits take place once a year. A written report on their results should be submitted to the Executive Board.

Article XI.    Commissions

1.       The Executive Board can use commissions for certain tasks. When their work is finished, the commissions are considered dissolved. The chair of the commission is named by the Executive Board.

Article XII.   

1.       All member associations can send observers to the General Assembly.

2.       Organisations dealing with questions concerning the aims of EARS may also send observers to the General Assembly.

3.       Representatives of the European Parliament, the EU Commission and United Nations can take part in the General Assembly as observers.

4.       Costs are to be borne by the organisations or authorities sending the observers.

Article XIII.   
Honorary positions

The members of the various bodies of EARS carry out their work on an honorary basis. Expenses are paid if possible.

Article XIV.   
Business year

The business year of EARS corresponds to the calendar year.

Article XV.   

The duration of EARS is unlimited. It can be dissolved at any time.

Article XVI.    Dissolution

The dissolution of EARS can be decided upon only in a General Assembly called for this purpose and by 2/3 of the delegates present and entitled to vote, if a founded motion with a statement of the Executive Board has been submitted, or if the number of member associations has decreased to more then 1/3 of the founding member associations of EARS. Voting by proxy is not permitted.

Article XVII.    Final Regulation

The Executive Board is charged with the regulation of financial affairs if EARS is dissolved. Any amount remaining after all obligations have been fulfilled will be transferred to one or more organisations pursuing goals, which are similar to those of EARS.

Article XVIII.    Validity

These statutes are valid by virtue of their acceptance by the Constituent Assembly.