STATUTE

FIRST TITLE
CONSTITUTION – DENOMINATION – LEGAL HEADQUARTER - DURATION

Art. 1
The volunteer association named INTERNATIONAL ASSOCIATION RING 14 FOR THE RESEARCH OF RARE NEUROGENETIC DISEASES and abbreviated as INTERNATIONAL ASSOCIATION RING 14 in consituted by voluntary membership.

Art. 2
The legal headquarters of the association are located in Reggio Emilia, Via Victor Marie Hugo n.34. Other secondary ...... operating offices may be set up in Italy and abroad.

Art. 3
The volunteer association RING 14 is disciplinated by this statute and acts in accordance with Law n°266 of 1991, with the regional and state laws as well as the general principles of the legal system.

Art. 4
The members of the association act in accordance with this statute. It sets the standard in accordance with which the activities of the organization shall be carried out.

Art. 5
The association may be helped by a SCIENTIFIC CONSULTING COMMITEE, a body that provides consulting services; said collaboration grants the opportunity for parents and doctors to work together for progress in the study and treatment of the pathology and the symptoms related to it.

Art. 6
The association has unlimited duration and may be dissolved in advance in accordance with this statute.

SECOND TITLE
AIMS

Art. 7
The main purpose of the association is to offer social solidarity without any profit. Its activities are provided free of charge to the people who have the genetic disease Ring 14 and all the aberrations associated to chromosome 14 as well as their families. Its aims are:

• To promote in the social, politica and scientific fields, any initiatives for diagnosis and for research of the most appropriate treatment of the symptomatology of the genetic disease Ring 14 and all the aberrations associated to chromosome 14.
• To find and form a network of all the families of children with Ring 14 disease and all the aberrations associated to choromosome 14 so that they may see the association as a true point of reference and no longer feel a sense of “isolation” as well as involving them in the creation of the first “data bank” for this disease.
• To gather information on the nature of the genetic disease Ring 14 and all the aberrations associated to chromosome 14 in order to provide a widespread information network using a variety of means.
• To raise friends for the purpose of promoting scientific research also through the use of scholarship, aimed at findig more and better information for creation of an appropriate programme for the correct treatment of the symptomatology related to Ring 14 and all the aberrations associated to chromosome 14 as well as expressive potentials of the people with this disease.
• To promote the diffusion of information and knowledge of this disease via Internet as well as via the association’s own pubblications.
• To create a network of consultants made up of doctors, researchers and health service operators interested in the problems related to Ring 14 and all the aberrations associared to chromosome 14 aimed at improved general health care.
• To sponsor, promote and manage appropriate fund raising initiatives or activities for the purpose of achieving the above mentioned aims.
• To inform people as widely.as possible of the founding of the Association Ring 14 of its aims as well as the activities organized to reach said aims.
• To promote cooperation with other national and international associations having similar aims and goals.

The association may carry out activities that are directly connected to institutional activities as well as other activities that integrate institutional ones.

 

THIRD TITLE
THE MEMBERS

Art. 8
All persons who believe in the aims of the association and are moved by a spirit of solidarity and intend to partecipate in its social activities may be members of the volunteer Association Ring 14.

Art. 9
People with the genetic disease Ring 14 or with all the aberrations associated to chromosome 14, their families and relatives as well as those persons who believe in the aims of the association and are moved by a spirit of solidarity and intend to partecipate in its social activities may be members of the volunteer association. Said persons have the right to vote and are eligible for election to the association officies.

Art. 10
Admission to the association, to be asked for in counting shall be decided on by the Board of Directors. The denial of a request for membership shall be motivated and comunicated. In this event it shall be possible to make an appeal to the Board of Directors.

Art. 11
The members of the association in accordance with te principle of democracy, have the right to elect the Board of Directors and to partecipate in all the activities of the association. In addition they have the right to be informed and to control, as established by the laws and the statute.

Art. 12
The members shall carry out their activities themselves, spontaneously and free of charge, and shall filfill their committments. Each person shall cooperate in the achievement of the aims of the association in accordance with individual abilities, aptitude and expertise. Volunteer activity shall not be reimbursed in one way by the beneficiary. Only the expenses actually accrued by the volunteer for the services rendered may be rembursed. The members who provide volunteer work shall be insured by the associaton against accident and illnesses related to the carring out of activity as well as civil responsability to third parties.

Art. 13
Membership can be dissolved by withdrawal, by exclusion by forfeiture or death of the member:

• Withdrawal becomes affective 6 months after being communicated.
• Exclusion may be decided on by the Board of Directors when the behaviour of a member is held to be in contrast with the aims of the association, preceded by contestation of the facts and acquisition of justification.
• Forclosure.of the member is declared by the Board of Directors in the event of non-payment of the annual membership fee set by the assembly after 30 days from the sending of the formal solicitation.

 

FOURTH TITLE
THE BODIES OF THE ASSOCIATION

Art. 14
The bodies of the association are:

• the assembly of members;
• the Board of Directors;
• the President.

 

Art. 15
The assembly is formed by all the members of the association, as shown in the register kept by the Board od Directors. The Assembly is responsible for:

• electing the Board of Directors;
• approving the budget;
• approving the regulations of the association;
• approving changes to the statute;
• deliberating the assolution of association.

The assembly of the association shall be held at least once a year for the approval of the budget. The president shall convene the assembly through written notification containing the meeting agenda to be sent out 7 days before the date of the assembly, or through an annoucement on the association internet site. The assembly shall alse be convened when it is deemeded necessary or when requested by at least one tenth of the members. The first convocation is valid when the majority of members are present. The second convocation is valid when regardless of the number of members present. The assembly’s resolutions are always made with the favorable vote of the absolute majority of the voters, not counting the number of abstainers. Changes to the statute shall be approved with the partecipation of the majority of the members and the favorable vote of the three fourth of those present. The matters discussed and the deliberations made shall be summarised in meeting notes drawn up by secretary and signed by the president. The meeting notes are kept by the president at the association legal headquarters. Every member of the association has the right to consult said meeting notes. The dissolution of the association must be deliberated by the favourable vote of at least the three fourth of the members. Votes are expressed openly apart from those concerning persons. Vote by delegation is allowed; members cannot represent more than two other members. The members of he Board of Directors cannot be delegated.

 

Art. 16
The Board of Directors in composed by varying number of members choosen from the members....., it goes from a minimum of 3 to a maximum of 11; they are elected by the assembly previous decision about their number. They are in charge for 3 years and can be reelected. The position is free of charge. The Board of Directors is convocated by the president when he/she thinks it is necessary or when the majority of the concellors asks for it. The Board of Directors has all the powers of ordinary and extraordinary administration except those ones reserved to the Assembly. The Board of Directors has to:

• arrange the budget of the association;
• decide the activities to be carried out (in the short and the long time) in accordance with the decisions of the assembly;
• carry out the deliberations of the assembly;
• provide to the administration of the association and to its functioning and to put into practice those decisions not taken by the assembly;
• help the President in the exercise of his functions;
• propose the list of the members of the Scientific Consulting Commitee;
• determine the ammount of money to be given to the Scientific Consulting Commitee;
• determine the yearly share of the association
• approve the programme proposed by the Scientific Consulting Commitee and verify periodically itys realization;
• analyse the problems, show the aims of the association and give the generale directives.

The deliberations of the council are valid with the presence of the majority of the councellors in charge and with the positive vote of the majority of them. These operations are presided by the president. The vice-president or the oldest councellor can substitute him. The matters discussed and the deliberations made shall be summarised in meeting notes drawn up by the secretary and signed by the president. The meeting notes are kept by the President at the association legal headquarter. Every member of the association has the right to consult said meeting notes.

 

Art. 17
The President of the Association is elected by the Assembly and he is choosen from its members with the positive vote of the absolute majority. The President has to:

• represent the association and to accomplish all the giuridical acts in which the association is involved;
• stipulate agreements and contracts previous approval of the Board of Directors;
• preside and convoke the assembly and the Board of Directors, to propose the matters to be discussed during the Council, to take care of its right course and to provide to the realization of the deliberations taken;
• supervise the offices, the organization of the voluntary net and the clinical staff. He has the faculty to delegate his functions to the members of the Board of Directors for specific matters and determinated tasks;
• subscribe the meeting notes and take care they are kept in the headquarter of the association where the members can consult them;
• supervise in cooperation with the Board of Directors to the organization and to the functioning of the services offered by the association.

The President is in charge for 3 years and can be reelected. The President meets the assembly one month before the expiration of his position, for the election of the new president. The vice-president can subsitute the president if he is absent or has particular problems and takes all his powers.

 

FIFTH TITLE
ESTATE – FINANCE – STAFF/PERSONNEL

Art. 18
The association gets the economical resources for its functioning and the development of its activities from:

• the associative shares;
• contributions of public and private subjects;
• generousity, donations and legacy;
• reimbources coming from conventions
• receipts coming from secondary commercial activities;
• real estate and personal property;
• all the other kinds of receipts in accordance with the law.

 

Art. 19
The receipts coming from secondary commercial activities are in a specific section of the budget and are used in accordance with the aims and the Laws concerning voluntary service. It is forbidden to share among the members the earning, the money left, the reserve funds or the capital.

Art. 20
The financial year goes from 1st January to 31st December. The financial balance/budget is approved by the assembly by 30st April (after the closing of the financial exercise)

Art. 21
The association can engage workers or have external collaborators but exclusively according to its needs and to qualify or specialize its activities in accordance with law concerning voluntary associations.

SIXTH TITLE
CONVENTIONS

Art. 22
The conventions between the association and public or private bodies are decided/stipulated previous deliberation of the Board of Directors. The President shall take care of these coventions whose copies are kept at the headquarters of the association.

SEVENTH TITLE
DISSOLUTION OF THE PARTNERSHIP

Art. 23
In case of dissolution of the association the properties left at the end of the operation of liquidation/settling will be given to other voluntary associations choosen by the assembly among those taking care of similar matters.