EURO-HSP

PREAMBLE

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.

OBJECTIVES

Euro-HSP is an international non-profit association with the following objectives:

Keeping up with and supporting medical research on HSP and/or related hereditary neuropathological degenerative conditions;
Central processing of information on such research and passing it on to the members of Euro-HSP;
Promoting and improving contacts between practitioners concerned with HSP and/or related hereditary neuropathological degenerative conditions and persons affected by this kind of diseases.
Investigating social, political and cultural matters connected with the welfare of people affected by HSP and/or related hereditary neuropathological degenerative conditions, as well as promoting and improving the exchange of information on such matters;
Promoting co-operation on an international level between national associations for people affected by HSP and/or related hereditary neuropathological degenerative diseases;
Co-operating with or being members of other national and international organisations and institutions that have the objective of furthering the welfare of individuals affected by a physical disablement and, inter alia, those suffering of a neuromuscular disease;
Gathering funds and collecting, managing, using and distributing contributions, legacies and donations or their benefits, for the purpose of stimulating and promoting both medical research into HSP and/or related hereditary neuropathological degenerative conditions and the welfare of people affected by HSP and/or related hereditary neuropathological degenerative conditions;
Serving as a meeting point for any and all implicated groups (people with HSP, their families, investigators and scientists, doctors, nurses, health care workers, etc) where all aspects dealing with optimal maintenance of health can be sought, including alternative methods with rational basis.
Participating in media and media events in order to keep the general public as well as public and private institutions, European or International, aware of HSP issues and concerns.
Other activities not specifically contemplated in these statutes that may favor the promotion, defense, and social and labor inclusion of people affected by HSP and / or related hereditary neuropathological degenerative conditions.

BY-LAWS
ARTICLE I: PATIENTS AND SCIENTIFIC BOARD

Section 1 - Patients

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.

Section 2 - Patient Representatives

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.

Section 3 - Scientific Board (SB)

A well-managed, diverse SB will be invaluable in taking Euro-HSP and the European efforts for treatment forward successfully. The SB would have a minimum of 5 people, one of whom also sits on the BoD of Euro-HSP. Members of the SB should be experienced in cellular and animal models (i.e., drosphilia and mouse) of HSP, experience of identifying new causative genotypes, experience of gene replacement and associated gene therapies, including researchers less familiar with HSP. Neuro-biology experience will be of use. We recommend having at least one physiotherapist on the SB.

The objectives of the SB are:

To provide advice and recommendations to the BoD on the direction of research that should be followed and therefore which research projects could be funded by Euro-HSP, or recommended for funding (to funding agencies) by Euro-HSP. This is most likely the way to arrive at the most effective treatments in the shortest time. The genetic diversity of HSP will complicate matters - different treatments for different genotypes, and which ones do we look at first, need to be investigated by the SB.
To foster communication between research groups and medical professionals across Europe and the world, with the aim of ensuring maximum visibility of research work to prevent repetition and to drive things forward at the maximum possible pace. There may be some limits to complete transparency (IP issues, etc), which we will try to traverse.
To be proactive by generating proposals for research and charitable funds for projects performed by the scientific groups that the BoD members are themselves part of. This would give the "Euro-HSP Research Group" a presence in the literature and will hopefully aid in gaining access to funds. Care regarding Conflict of Interest must be excercised here.
To co-ordinate the development of an international database of people with HSP that accurately charts natural history and progression of the conditions, allowing for the most accurate assessment of any interventions that are developed. (This task may not be best suited for the Scientific Board but it is something that is crucial to being able to deliver effective treatment(s) for the conditions. This will need some scientific/medical input as to the characterisation of history and progression and efficacy of interventions. The presence of physiotherapists on the board is important, as they have a knowledge and understanding of physical characterisation that neurologists may not. Especially in the database.

Communication between physiotherapists will also allow beneficial activities (types of stretching, etc) to be communicated effectively around all member countries).

ARTICLE II: MEMBERSHIP

Section 1 - Membership Categories

Euro-HSP will have four categories of member organizations: Full Members, Associate Members, Affiliated Members and Honorary Members.

Section 1.1 - Full Members

European National Patient Organizations related to HSP will be admitted to Euro-HSP as full members with the right to vote. They will be subject to the provisions of the Statutes.

To become Full Members, organizations must meet the following criteria:

Must be non-profit and non-governmental.
Must have a legal status appropriate to country of origin, with a written constitution and/or by-laws. If no appropriate legal status exists in the country of origin this criteria may be waived at the discretion of the Board of Directors.
May be a regional, national or local organization.
Must demonstrate commitment to patients and the principle of patient-centred healthcare in their guiding statements, such as their vision, mission or organizational objectives, and their activities. Typically the organization's mission will be to respond to the needs of patients in a specific geographical area, supporting and representing them.
The organization must be patient-driven. This means that the needs and views of patients drive the organization's strategy, policies and activities in a significant way and that the organization is capable of representing the needs and views of these patients. Organizations achieve this in different ways. Organizations must demonstrate that they use at least one of the following methods:

The majority of the organization's voting members are patients, patient representatives or patients' organizations with the power to nominate and elect their own governing body.

The majority of the organization's governing body are patients, patient representatives, or representatives of patients' organizations.

The organization can demonstrate that it has a governance structure that ensures that it is patient-driven, i.e., the needs and views of patients drive the organization's strategy, policies and activities in a significant way and that the organization is capable of representing the needs and views of these patients. Patients and patient representatives may in addition support and drive the organization financially through voluntary contributions. This governance structure must be described and illustrated in a written letter accompanying the organization's application.

Section 1.2 - Associate Members

National Patient Organizations from countries outside Europe related to HSP who meet the Full Member's criteria may be admitted to Euro- HSP and will be subject to all rules as laid down in the Statutes. Associate members have the right to attend Euro-HSP meetings and will have the right to vote except on European matters.

Section 1.3 - Affiliated members

Charitable organizations that do not meet the criteria required for Full or Associate Members, as well as individuals from countries where no National Association is in existence, may be admitted as affiliated members. An affiliated member may attend all Euro-HSP meetings as observer without the right to vote. The Chairperson may permit an affiliated member to address the meeting.

The foundation of a National Patient Organization covering HSP in the country of an Affiliated Member will result in the termination of such individual Affiliated Membership in the event that this national association is admitted to Euro-HSP as a Full or Associate Member.

Section 1.4 - Honorary members

Individuals or associations liable to make any valuable contribution to Euro-HSP may be appointed as an honorary member for an unlimited period of time. An honorary member may attend all meetings of Euro- HSP in the capacity of observer without the right to vote.

Section 2 - Membership Application

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.

An Application Form for membership can be found at www.eurohsp.eu .

Each new member will receive a copy of the Statutes and the Bylaws, which are also available at www.eurohsp.eu

Section 3 - Membership Fees

Membership fees are set and amended by the Board of Directors and approved by the General Assembly.

At the GA 2011 the annual fees for full membership were set at ? 150 and afterwards approved by the national member associations.

At the GA 2012 this was added: At the discretion of the Board of Directors, membership fees can be waived temporarily (on an annual basis), especially for new groups, groups from the eastern parts of Europe, or groups who are in economic struggles. These groups will maintain their right to vote.

There are no fees for Honorary and Affiliated Members.

Fees must be paid during the first quarter of the natural year (by 1 April)

Section 4 - Member's regulations

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.

Section 5 - Termination of Membership

An organization's membership may be terminated by the following:

A written letter of resignation addressed to the Board of Directors.
Legal liquidation proceedings or dissolution
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:
Willful violation of any by-law, rule, policy or practice duly adopted by the General Assembly and/or the Board of Directors of Euro-HSP.
Any other conduct materially prejudicial to the interests of Euro-HSP.
Failure to comply with financial commitments to Euro-HSP. Any member in arrears for more than one year with the settlement of financial commitments (most specifically, membership fees) will be considered as having terminated their membership. In the event of the member having difficulties in complying with financial commitments, they may appeal to the Board of Directors. The conditions under which membership in Euro-HSP can be maintained will then be reassessed ad hoc.
Activities in conflict with Euro-HSP. Membership can be terminated due to any activity considered detrimental to the best interests of Euro-HSP. Any decision regarding an exclusion of this nature will have to be adopted by the Board of Directors, with at least a three-fourths majority of the BOD. The member concerned will be informed at least thirty days in advance of the meeting and given the opportunity of hearing the evidence and of defending their actions. The member has the right to appeal at the next General Assembly, in which case any decision adopted in favor of excluding the member will have to be adopted by a three-quarters majority of the members attending.

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.

ARTICLE III: GENERAL ASSEMBLY

Section 1 - General Assembly (GA)

The GA is the final authority of the Federation. The General Assembly of Euro-HSP shall consist of one delegate from each Member organization and in case of necessity , if one member or more are lacking, of a maximum of two delegates from the same country. The Member organization’s 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 week 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

(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 a face-to-face meeting cannot happen, all points can be voted in an online meeting. 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.

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.

Section 2 - Extraordinary Meetings

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.

Section 3 - Voting at Meetings

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:

(a) Another individual from the member organization who will attend the Meeting instead of the Euro-HSP Permanent Representative (an Alternate Representative), or

(b) The Euro-HSP Representative from another member organization who is attending the Meeting if both organizations are up-to-date with their membership fees. No member organization can hold more than one Proxy.

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.

Section 4 - Tied Votes

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.

Section 5 - A Quorum

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.

ARTICLE IV: BOARD OF DIRECTORS

Section 1 - Role

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. 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.

Section 2 - Composition of Board

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.

Section 3 - Election

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.

Section 4 - Term of Board Membership

Board Members shall be elected for a two-year term and can be reelected. The Board members will be elected in a rotating fashion so the complete Board does not turn over simultaneously.

Section 5 - Termination of Board Membership

Membership of the Board shall be terminated by:

Death
Resignation
End of term, unless followed by subsequent re-election.
The Board Member ceasing to be an active Member of the Member organization whom they represented at the time of their election. In the event of this, the Board Member shall submit their resignation as a member of the Euro-HSP Board of Directors unless, with the approval of the Board, the Member organization wishes them to remain as their designated representative.
Dismissal by the Board. A Board Member (Representative of Member organization) shall be dismissed by a two-thirds vote of the other Board Members, however not until the opportunity is offered to the Member to justify and defend him/herself in a meeting. The Board Member concerned shall have the right to be assisted by a third party. The Board Member concerned shall not have the right to be present at the part of the meeting during which the decision is taken about the dismissal or to take part in the vote. For the vote, a two-thirds quorum is required. Alternatively, the BOD can negotiate with the Member organization to substitute the Representative on the BOD if the case is personal. If the case in fact is organizational, the organization shall not be offered the opportunity of substitution.
A BoD vacancy occurring for any reason, including the removal of a Member, may be filled for the unexpired portion of the vacated Member's term by the Board of Directors, a co-optation. The first option shall go to the Member organization if it has been an amicable separation of the Representative.
If the Member Organization ceases to be Member, the corresponding Member Representative on the BOD also shall cease to be a Board Member.

Section 6 - Special Advisors

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.

Section 7 - Meetings

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.

Section 8 - Quorum

The proceedings are valid only if at least two thirds of the Board Members are represented.

Section 9 - Voting

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.

Section 10 - Approval

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.

Section 11 - Staff

The Board of Directors may engage such staff as it may deem necessary and appropriate.

Section 12 - Remuneration

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.

ARTICLE V: OFFICERS

Section 1 - Officers

The officers of the Board of Directors shall be the President, Vice- President, Secretary-General and Treasurer, aka the Executive Team.

Section 2 - Election and Terms

Officers shall be elected by and from the Board of Directors. All officers shall hold office for two years. Any officer can be reelected.

Section 3 - Removal and Vacancies

Any 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) If 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.

(b) 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.

Section 4 - Chair

he 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.

Section 5 - Deputy Chair

The Vice-President shall chair meetings of Members of Euro-HSP, the Board of Directors and the Executive Team in the absence or disability of the President. He/she shall also perform such other duties as assigned from time to time by the President or Board of Directors.

Section 6 - Secretary-General

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.

Section 7 - Treasurer

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.

Section 8 - Supervision of paid staff.

To be defined

ARTICLE VI: COMMITTEES

Section 1 - Executive Team

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.

Section 2 - Committees and Other Bodies

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.

ARTICLE VII: AMENDMENT OF STATUTES OR BY-LAWS

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 seven days prior to the GA or Extraordinary GA. A copy of any amendment proposed for consideration shall be sent to all Members at least seven 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.

ARTICLE VIII: DISSOLUTION

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.

ARTICLE IX: FINAL PROVISIONS

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.

Updated February 2022-02-08 by the Euro HSP Board