Statutes

NAME - OBJECTIVES - ADDRESS

Art. 1 The European Federation of Hereditary Spastic Paraplegia (HSP), referred to hereinafter as EURO-HSP or the Federation, is made up of national groups from varying countries, and will operate according to the French Law of 1 July 1901. HSP is also known as Familial Spastic Paraparesis or Strümpell-Lorrain Syndrome.

Art. 2 EURO-HSP is an international non-profit patient federation, composed of national legally recognized associations, or non-legally recognized associations in countries where there are no associations yet. EURO-HSP is politically and religiously neutral.

Its objectives are to:

- collaborate with scientists and researchers to better understand, discover treatments and find a cure for the disease,
- better all social, political and cultural matters connected with the welfare of people affected by HSP,
- keep the broader society aware of the existence of HSP, and
- expand international cooperation between patients, organisations and experts.

Art. 3 The duration of EURO-HSP is indefinite.

Art. 4 EURO-HSP has its seat in France, currently in Paris (75). The seat of EURO-HSP may be moved anywhere decided by the Board of Directors (BoD or Board). For the purpose of conducting its business, EURO-HSP may establish offices anywhere it wants to at any time.

Art. 5 By-laws will be established by the Board to implement and clarify these Statutes. They will apply to all Members of the Federation.


MEMBERSHIP - FEES - REVOKING MEMBERSHIP

Art. 6 Federation Members are Associations or other organizations of people with hereditary spastic paraplegia (HSP) from varying countries.

Each Member, whether by its chairperson in case of a registered association or its head if it is an informal organization, shall designate in writing and until further notice, a "Permanent Representative" to the Federation.

The Permanent Representative acts on behalf of the Association or group that they represent within EURO-HSP. As such, they are especially invited to all Members meetings on behalf of the Association or group they represent.

In case of non-availability of the Permanent Representative, any Member of EURO-HSP may temporarily designate an Alternate Representative who has the same rights and responsibilities as the Permanent Representative.

Art. 7 Membership adherence means fully complying with these Statutes and the By-laws as well as paying the annual Membership fee, the amount of which is set each year by the General Assembly.

The Board shall decide freely on Membership applications. Any refusal of Membership need not be explained.

Membership is forfeited upon resignation, the closing of the national association, expulsion by the Board for non-payment of Membership fees or serious misconduct, qualification of "serious" being left to the discretion of the Board. The Member concerned will be invited, via its Permanent Representative, to provide explanations.

 

RESOURCES and CARRYING OUT WORK

Art. 8 The resources of the Federation consist of:

Membership fees and contributions,
Donations and bequests,
Grants from the European Community, from its component states, regions, departments, municipalities, various groups or institutions,
Sample products,
Generally, any resources acquired legally.

Art. 9 EURO-HSP can act via all legal means in order to achieve its goals.


ADMINISTRATION and OPERATIONS

Art. 10 EURO-HSP is administered by a Board composed of 4 to 9 Members, elected by the General Assembly by the Members of the Federation. The Board elects from within its Members:

a President, the primary representative of the Federation
a Vice-President, the President's assistant, acting as President in their absence
a Treasurer, entrusted with establishing and maintaining, or empowering somebody under their responsibility, the accounts of the Federation
a Secretary-General, 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.

Mandates are for a period of two (2) years and are renewable.

Each Member Association or group can have no more than one seat on the Board.

In case of vacancy, the BoD can co-opt a delegate to sit on the BoD until the next GA.

The mandate of the person so appointed shall expire at the time that would normally expire for the original BoD Member.

Art. 11 The Board is the administrative body of EURO-HSP. In general, the Board is vested with all powers not exclusively reserved for the General Assembly.

Art. 12 The Board shall meet, physically or by any appropriate medium, including telephone or electronically, upon the initiative of the President.

Voting by proxy to another Member of the Board is authorized. Each Member of the BoD may not hold more than one proxy.

No quorum is required for BoD votes. Decisions are taken by simple majority of the votes cast by Members present or represented. In case of a tie, the President casts the deciding vote.

A record of all BoD meetings will be maintained.

Art. 13 Board Members will not receive payment for his or her Board work. A Board Member's justified expenses will be reimbursed, unless the Board decides otherwise in specific cases.

Art. 14 The General Assembly is comprised of all Members who have paid their annual Membership fee. The Ordinary General Assembly shall meet physically or by any appropriate means of communication, including telephone or electronically, once a year. The Permanent Representatives of the Federation are convened by the President, at least a month before the event.

The agenda, composed by the Board, is included in the invitation to the GA.

Voting by proxy is allowed. Any Member may not hold more than one Proxy.

The Ordinary General Assembly shall be valid however many Members are present or represented by Proxy.

The decisions of an Ordinary General Assembly are made by simple majority. Each Member has one vote, that of the Association or group he or she represents. In case of a tie, the President casts the deciding vote.

A record of the meetings will be maintained.

Art. 15 If necessary, the BoD may convene an Extraordinary General Assembly (EGA) in order to modify the Statutes or to dissolve the Federation. An EGA 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 Permanent Representatives + 1, those physically present plus those represented by Proxy. In the absence of a quorum, a new Extraordinary GA will be convened under the same conditions as above that can then adopt any final and valid decision regarding the proposal.

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

Other than these exceptions, the Extraordinary General Assembly shall meet and deliberate in the manner as prescribed above in Article 14.

In case of dissolution of EURO-HSP, one or more liquidators shall be appointed by the General Assembly. Any assets shall be distributed in accordance with the legal ramifications of the French Law of 1 July 1901.