As stated in Art. 5 of the Statutes, these by-laws contain additional details for the regulation and activities of Euro-HSP.
They must not contain any provisions contrary to French law nor the Euro-HSP Statutes and are to be respected by all Federation member organizations and their delegates. While respecting utmost the Laws of France, the working language of the association is English.
They regulate the operation of the European Federation on Hereditary Spastic Paraplegia (Euro-HSP), in conjunction with the Statutes.
Euro HSP was registered as an Association in Paris (France) under the reference number W751205920. Creation was published at the Journal Officiel de la République Française of 31st July 2010 (number 31 of year 142) on page 3717 under the number 1242.
Euro-HSP is an international non-profit association with the following objectives:
In these by-laws, a patient is “a person with HSP”. Euro HSP aims to represent all patients regardless of gender, race, class, culture, religious belief, age, sexuality, lifestyle or degree of able-bodiedness.
In these by-laws, a patient representative is “a person that is significant for a patient or their care, who can represent that patient (for example, a partner, parent, family member or close friend). Health professionals are not considered patient representatives unless they are a significant relation or friend of a patient. In some instances (countries with no patient associations), health professionals can be considered a link to patients until a patient association is formed.
Euro-HSP will have four categories of member organizations: Full Members, Associate Members, Affiliated Members and Honorary Members.
In order to become a Euro-HSP member, the applying organization must complete a membership application form available from Euro-HSP. The Board of Directors can give authorization to a member of staff to assess the applying organization’s suitability for Membership using Article II of these By-Laws. Approval or rejection of a Membership application is then determined by the Board of Directors according to Article II of these By-Laws.
Euro-HSP can invite any HSP-related organization to become a member of the Federation.
The BoD will define an Application Form for membership.
Each new member will receive a copy of the Statutes and the By-laws.
Membership fees will be set and amended by the Board of Directors and approved by the General Assembly. Fees should take into account the different annual incomes organizations have in different regions of the world. As a guide, Euro-HSP fees will be similar to those of EuroRDIS.
There are no fees for Honorary and Affiliated Members.
Fees must be paid during the first quarter of the natural year (by 1 April)
Any Full or
Associate Member whose representative becomes a contracted employee
of Euro-HSP will automatically become an Affiliated Member
(non-voting) for the duration of their period of employment.
No Euro-HSP Member shall vote on any financial matter that involves a potential economic advantage to themselves, their family, or any Association they are member of. Any such Member must declare their interests in advance of such a vote. Failure to declare interests may result in the vote being invalidated.
An Internal Auditor may be elected by the GA in order to review the Federation’s accounts and financial practices to give the member organisations a description of them independent from any paid legal auditor. The period in office of the Internal Auditor/s is 15 months from the start of the subsequent financial year, with 3 months overlapping with the incoming Internal Auditor/s. They may not be a Member of the Board, nor may they be members of any Group appointed by the Board.
An organization’s membership may be terminated by the following:
The Board of Directors, after due deliberation, may recommend the suspension or termination of any organization’s membership of Euro-HSP. Sufficient cause for suspension or termination shall be:
Any renewal of membership after exclusion will require the support of three-fourths of the Board of Directors. Any such decision will require confirmation from three-fourths of the attendance at a subsequent general meeting.
The GA is the final authority of the Federation. The General Assembly of Euro-HSP shall consist of one delegate from each Member organization. This delegate shall be known as the organization’s Euro-HSP Permanent Representative. The General Assembly shall elect a Board of Directors to act on its behalf.
As stated in the point 14 of the Statutes, the General Assembly, if possible, shall meet annually at such a place and hour as the Board of Directors may designate. Written notice shall be given to each member organization of the time and place of the GA at least one month prior to such meeting. Matters subject to the approval of the Annual Meeting of the General Assembly shall include:
(a) Election of the Board of Directors
(b) Annual accounts for the previous financial year
(c) Appointment of the Internal Auditor, if necessary
(d) Any other such business as may properly come before the meeting
The Board of Directors will also present an Annual Report on Euro-HSP’s activities during the previous financial year and any major strategic plans or programmes for the future.
If, due to budgetary problems, a face-to-face meeting cannot happen, all points can be voted via a written consultation. In this case, the BoD will send to each member organisation by e-mail the text of any proposed resolutions, with a summary and all documents needed for Members' information. Member organisations will have 15 days from the receipt date to respond with their vote.
The voting process will be adopted by the BoD (ie, electronically or face-to-face), taking into account the number of member organisations and the expenses of a GA.
Minutes of all legally required meetings and actions will also be produced in French as soon as required by law (ie, changes in officers of the Board after a General Assembly).
Extraordinary Meetings of the General Assembly may be called by the Chair of the Board of Directors who shall fix the time and place for the meeting. An Extraordinary Meeting may also be called by request in writing of not less than a third of the member organizations. Written notice of the date, time and place of the extraordinary meeting shall be announced at least thirty days prior to such meeting.
Each member organization of Euro-HSP not in arrears shall have the right to cast one vote at GA’s and Extraordinary GA’s. Such vote(s) may be cast in person by an individual certified as the member’s Euro-HSP Permanent Representative, or by written Proxy duly executed by or on behalf of such member. The Proxy can be established by a written document and can designate:
The Board of Directors may also set up procedures for postal ballots for any matter subject to the approval of the General Assembly.
Only one vote per country is allowed. If there are multiple members from the same country, they will work out each vote by themselves and present one vote to the GA.
If the votes are tied on a motion not concerning elections, the motion will be rejected. Voting on persons is by ballot unless the Assembly decides to vote by acclamation. If, as regards an election, no one secures an absolute majority, a second vote will be held (between the nominated candidates). If again no one secures an absolute majority, the Chair shall have the casting vote.
Any meeting needs a quorum, which 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 meeting will be convened under the same conditions that will then adopt a final and valid decision on the proposal, regardless of the number of Representatives voting.
The business and affairs of Euro-HSP shall be supervised and directed by the Board of Directors. The Board of Directors may delegate designated authority to a Chief Executive or other paid staff members for the day-to-day running of the association, and from time to time to committees and working groups as it may see fit. At least 50% of the Directors should be individuals with HSP and one a scientist. Each country shall have maximum one person on the Board at any time. Two-thirds of the Board members need to be Full Members.
The Board will decide on their own rules of operation, including the rules needed for employment contracts. These must be written (in the By-laws) and notified to the membership.
All the powers not assigned by law or the Statutes or the By-Laws to other bodies are vested in the Board of Directors.
The Board of Directors shall consist of those individuals nominated by Members and subsequently elected by the General Assembly. Persons from the Pharmaceutical Industry or who form part of any administrative boards of same may not sit on the Board of Directors.
Each Member organization can nominate an individual from their organization for election to the Board of Directors prior to the GA. Nominations must be received at least fifteen days prior to the election. Details of the nominated representatives and the number of places open in the Board of Directors must be supplied to all Member Organizations no later than one month prior to the GA.
Board Members shall be elected for a two-year term and can serve on the Board for a maximum of three consecutive terms for a total of six years. The Board members will be elected in a rotating fashion so the complete Board does not turn over simultaneously. Therefore, the first elected BODs may have some of its members elected for three years, chosen within the Board as convenience and capabilities permit.
Membership of the Board shall be terminated by:
The Board of Directors can appoint Special Advisors from time to time as required. A Special Advisor may be someone with certain skills that add to those of the Board of Directors. They may be able to assist the Board with a particular issue or project, or give more general support. Euro-HSP Special Advisors use their expertise and experience to assist the Board of Directors in achieving their aims. These aims are all focused on fulfilling Euro-HSP’s mission. Special Advisors have no voting rights within the Board of Directors and no decision-making power. The Board of Directors is under no obligation to act upon the advice or recommendations of an Advisor. Advisors are appointed by a simple majority vote of the Board of Directors. They serve for a period of one year, and this term can be renewed by the Board.
Meetings of the Board of Directors shall be held at such time and place as shall be designated by the Chair at least each year. In addition to this, sufficient meetings to ensure the efficient governing of Euro-HSP should be held by means of at least monthly conference calls and other means (webex, etc).
Special meetings of the Board of Directors may be called by its Chair who shall fix the time and place. The Chair shall call a Special Meeting of the Board of Directors at the request in writing of not less than a majority of its members. Written notice of the agenda, date, time and place of each Special Meeting shall be given to all Members at least thirty days prior.
All meeting minutes and action points will be transmitted to the membership within 4 weeks.
The proceedings are valid only if at least two thirds of the Board Members are represented.
At any meeting of the Board of Directors, each Board Member shall be entitled to cast one vote. Votes are decided by a simply majority. In the event of a tied vote the Chair shall have the deciding vote. Each Board Member may give their proxy to another Board Member. However, one Board Member may not hold more than one proxy. Votes are valid only when at least a majority of the Members take part.
Any matter requiring the approval of the Board of Directors shall be determined by an affirmative vote of a simply Majority of members present at a quorate meeting unless otherwise provided in the Statutes. Matters can also be approved without holding a meeting, provided all the officers have expressed their views on the motion concerned in writing, including electronically.
The Board of Directors may engage such staff as it may deem necessary and appropriate.
Board Members shall not receive any salary or other remuneration for their work as such; expenses incurred for the benefit of the association shall be reimbursed if requested.
Any Member of Euro-HSP may receive payment for doing specific professional work for the Federation, previously agreed to in writing by the Board. During the time of work, the Member will not have right to vote.
The officers of the Board of Directors shall be the President, Vice-President, Secretary-General and Treasurer, aka the Executive Team.
Officers shall be elected by and from the Board of Directors. All officers shall hold office for two years. Any officer can be reelected.
officer elected by the Board of Directors may be removed by the Board
with or without cause in accordance with Article IV, Section 5. A
vacancy in any office occurring for any reason, including the removal
of an officer, may be filled for the unexpired portion of the vacated
officer's term by the Board of Directors.
a member of the Executive Team is unable to perform their duties for
any reason for a period of longer than 90 days the Executive Member
shall stand down from the position and the Board may appoint someone
else from the board to take on those responsibilities for the
remainder of the term of office. The Executive Member standing down
shall remain a Board Member for the remainder of their term unless
he/she decides to resign from the Board.
In the case of the President, the Vice-President shall become
President to complete the term of office of the retiring President.
(c) Should the Vice-President become President through retirement under Section 3 (b), then the board shall elect a Vice-President to assist the new President in the performance of his/her duties.
The President shall preside at all meetings of Members of Euro-HSP, the Board of Directors and the Executive Committee; and shall be an ex-officio member (with the right to vote) of all committees.
The Secretary-General shall keep or cause to be kept an accurate record of the proceedings of the meetings of Members, the Board of Directors and Executive Committee; shall preserve the records, documents and correspondence of Euro-HSP; shall give or cause to be given notice of all meetings of Members and of the Board of Directors. The Secretary-General shall be a member (with the right to vote) of the Executive Committee. He/she shall also perform duties as may be assigned from time to time by the President or Board of Directors.
The Treasurer shall be the custodian of the Federation’s funds. The Treasurer shall deposit, or cause to be deposited, these funds in the Federation’s name in such depositories as the Board of Directors shall designate. Subject to such reporting to the Board of Directors an accurate account of the financial condition of Euro-HSP shall occur at least twice a year. The Treasurer shall be a member (with the right to vote) of the Executive Team. They shall also perform duties as may be assigned from time to time by the President or Board of Directors. The Treasurer shall oversee and work with the staff members who handle the day-to-day financial business of Euro-HSP, including disbursements, selling and purchasing goods, accounting and auditing procedures. The Treasurer presents the financial report and asks the GA for approval. The accounts will be available for inspection by the member organisations.
To be defined
The Executive Team shall consist of the officers of Euro-HSP as detailed in Article V: the President, Vice-President, Secretary-General and Treasurer of the Board of Directors. The Executive Committee may act between meetings of the Board of Directors, in accordance with the Statutes, By-Laws and policies laid down by the Board of Directors. Reports of all meetings and actions taken must be reported to the full Board of Directors in due time.
The Board of Directors may constitute and delegate specific authorities to the Executive Team, and to other committees and working groups, which from time to time may be required, to pursue the policies, programs, projects, commitments and membership guidelines it has established.
Euro-HSP’s Statutes or By-Laws may be amended, repealed, or altered, in whole or in part, with a two-thirds majority of the votes cast by the Membership at a General Assembly or Extraordinary GA of Euro-HSP. Amendments may be brought before the General Assembly by the Chair at the request of:
(a) The Board of Directors
(b) By-laws: Not less than one third of the members. Statutes: Not less than two-thirds of the members. The request must be in writing.
Any proposed amendment must be received by the Chair at least thirty days prior to the GA or Extraordinary GA. A copy of any amendment proposed for consideration shall be sent to all Members at least fifteen days prior to such meeting.
Alteration to the Statutes will not come into effect until the alteration is registered with the French Authorities.
The provisions of this Article apply analogously to any decision to merge or divide the Federation.
The Federation can be dissolved by a decision of a two-thirds majority of the (Extraordinary) General Assembly. The provisions of Article VII apply. The Federation will continue to exist after dissolution to the extent necessary for the liquidation of its assets. Documents and announcements sent by the Federation must contain the words “in liquidation” after its name. Liquidation ends when the liquidators are unaware of the existence of any further assets. The Board of Directors are the liquidators of the Federation’s assets. They continue to be subject to the provisions concerning the appointment, suspension, dismissal and supervision of Board members. During liquidation the other provisions of the Statutes and By-Laws remain in force as far as possible. On completion of the liquidation, the books and documents of the dissolved Federation will remain in custody of the person designated by the General Assembly for that purpose for seven years. In accordance with the Statutes, the credit balance after liquidation will be used for those purposes to be determined by the General Assembly in keeping with the objects of the Federation.
Other cases - Any and all cases not foreseen by these statutes will be dealt with in accordance with accepted international non-profit associations best practice.