EURO HSP Statutes

EURO HSP STATUTES

(Registered at the Prefecture de Police de Paris on 2010/07/21. Ref number W751205920

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Article 1

It is based, among the adherents to these statutes, an association governed by the law of 1 July 1901 and its implementing regulations, entitled European Federation of Hereditary Spastic Paraplegia, below also called Federation or EURO-HSP

Article 2

The Federation of Euro-HSP is an apolitical and not confessional organization who aims to:

  1. Collaborate with physicians, scientists and researchers working on HSP in order to understand the disease and find appropriate treatment;
  2. Promote, defend, or facilitate the social integration of people with HSP;
  3. Inform society of the existence of HSP and make available the state of knowledge on these diseases both at scientific, medical and societal levels,
  4. Promote international cooperation between patients with HSP.

Article 3

The Federation is established for an indefinite period.

Article 4

The head office is in Paris (75). It may be transferred to any other place by decision of the Board.

Article 5

Bylaws will be established by the Board to implement and clarify the present statutes. It will apply to all members of the Federation.

MEMBERSHIP – ADMISSION – CANCELLATION – FEES

Article 6

The Federation members are Associations or other organizations of people with hereditary spastic paraplegia (HSP) from varying countries.

Each member, whether by its chairman if it is a registered association or his head if it is an informal organization, shall designate by written during its accession to Euro-HSP and until further notice, a “Permanent Representative” in the Federation. The Permanent Representative commits the Association or group that he represents and acts on its behalf with EURO-HSP. As such, he is particularly called to the various statutory meetings on behalf of the Association or group he represents. In case of unavailability of its Permanent Representative, any member of EURO-HSP may temporarily designate another representative who then has the same prerogatives as the legal Representative.

Article 7

Membership quality requires to fully approve to these Statutes, to the By Laws and to pay the annual contribution, whose amount is set each year by the General Assembly.

The Board shall decide freely on membership applications. The refusal of admission needs not to be motivated.

Membership is lost by resignation, the closing of the national association, striking out by the Board for non-payment of dues or serious misconduct, qualification of “serious” being left to the discretion of the Board. The concerned member is already invited, through its Permanent Representative, to provide explanations.

RESOURCES – MEANS OF ACTION

Article 8

The resources of the Federation consist of:

  1. The amount of contributions, -
  2. Donations and bequests,
  3. Grants from the European Community, of its component states, regions, departments, municipalities, various groups or institutions,
  4. Demonstration products,
  5. Generally, any resources acquired in accordance with the effective legislation.

Article 9

EURO-HSP can implement all legal means which enable it to achieve its goal.

ADMINISTRATION AND OPERATIONS

Article 10

EURO-HSP is administered by a Board composed of 4 to 9 members, elected by the General Assembly among the members composing the Federation. The Board elect within his members:

  • a President, responsible in particular to represent the Federation in all acts of civil life
  • a Vice-President, responsible in particular for assisting the President and deputize in his absence
  • a Treasurer, entrusted with establishing, or empowering somebody under his responsibility, the accounts of the Federation
  • a Secretary, whose duties include the maintenance of administrative records.

Any one person may be entrusted with more than one of these tasks, although whenever possible, each task should have their own person assigned.

The mandates are for a period of two years and are renewable under the same conditions as the original warrant.

Each member Association or group can have no more than one seat in the Board.

In case of vacancy, the Board may provide a temporary replacement of his members, until the next General Assembly. The mandate of the officers so appointed shall expire at the time that would normally expire for replaced members.

Article 11

The Board has the broadest powers to administer EURO-HSP in the context of its purpose. In general, the Board is vested with all powers not exclusively reserved to the General Assembly.

Article 12

The Board shall meet, physically or by any appropriate medium, including telephone and email, at the initiative of the President.

Voting by proxy to another member of the Bureau is authorized. Each agent cannot hold more than one power.

No quorum is required for validating deliberations. Decisions are taken by simple majority of votes cast by members present or represented. In case of a tie, the chairman has a casting vote. Record of the sessions will be done.

Article 13

The functions of the Board officers are free.

Only refunds of charges are possible, dully justified, and incurred in connection with the subject of the Federation. They are authorized by the affirmative vote of officers.

Article 14

The General Assembly comprises all members having paid their annual contribution.

The Ordinary General Assembly shall meet physically or by any appropriate means of communication, including telephone and email, once a year.

The Permanent Representatives of the Federation members are convened at the initiative of the President, at least a month before the deadline. The agenda, previously set by the Board, is set on the summons.

Voting by proxy is allowed. Every member has the opportunity to be the agent of choice among the other members of the Federation, provided for that purpose to issue a power properly written. Each member may not hold more than one power.

The Ordinary General Assembly shall be valid whatever the number of members present or represented. The decisions of an Ordinary General Assembly are taken by simple majority. Each member has one vote and the vote of the member he represents.

In case of a tie, the chairman has a casting vote.

Record the sessions are taken.

Article 15

If necessary, the BoD may convene an Extraordinary General Meeting, including any change of status or dissolution of the Federation. It may also meet at the request of a third of the members of the Federation.

The quorum for an EGA will be equal to half of the member Delegates + 1 who are either physically attending and represented via proxy.

In the absence of a quorum, a new Extraordinary GA will be convened under the same conditions as above that will then adopt a final and valid decision on the proposal, regardless of the number of Delegates attending or represented.

Amending the Articles of these Statutes or dissolution of the Federation requires the votes of at least two-thirds of the Delegates attending or represented by proxy and entitled to vote.

Apart from this exceptions, the Extraordinary General Assembly shall meet and deliberate in the manner prescribed by Article 14 with the following changes.

In case of dissolution, one or more liquidators are appointed by the Assembly and the assets, if any, shall vest in accordance with the Act of 1 July 1901 and its implementing regulations.

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