IPWSO Statutes & Mission Statement

Mission Statement

  • Improve the quality of life for all people with Prader-Willi syndrome and their families.

  • Foster the foundation and development of new national PWS Associations.

  • Encourage PWS associations to exchange and share their PWS projects and experiences.

  • Provide education and support on PWS around the world.          

  • Provide free testing for diagnosis in countries where it is not available.

  • Through international conferences provide a forum for communication and collaboration about medical and scientific research advances, caregiver standards, and new therapies and insights for families.

IPWSO Statutes

Article 1. Name and Location

1. The Organisation shall be named:

INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION - Or abbreviated to “IPWSO “(and referred herein to as “IPWSO” or the “Organisation”)

1.2    IPWSO was founded on 5 May 1991 at the First International IPWSO Conference held in The Netherlands and was registered as a charity in Sweden.  The Board of IPWSO decides from time to time if and where IPWSO will be registered.      

1.3  IPWSO’s headquarters and Secretariat will be located according to the convenience of the President and in agreement with the Board. The official language is English.

Article 2. Objectives and Aims

2.1  IPWSO is politically neutral, with no discrimination as to race, sex, colour or religion of any nature, and is non-profit-making. It will support the member associations in their efforts to:

2.1.1  Improve the quality of life for all people with Prader-Willi syndrome (PWS) and their families;

2.1.2  Improve the physical and mental well-being, socially as well as occupationally, of all people with  PWS  so that they may, according to their wishes, lead a life as normal as possible and be in a position to achieve what is allowed by the constitution of their country and what is settled in the Declaration of the United Nations in the Rights of Man and of Handicapped Persons.

2.3 The IPWSO shall endeavour to collaborate, or affiliate itself, with other organisations with similar objectives.

2.4 The IPWSO shall also act as a liaison centre to collate and disseminate PWS material to its members by organising international conferences and publishing newsletters. By so doing it aims to:

2.4.1 Stimulate international collaboration on PWS research projects on the origins, management and prevention of the Prader-Willi Syndrome PWS;

2.4.2 Encourage national associations to exchange and share their PWS projects and experiences

2.4.3 Foster the foundation and development of new national PWS Associations;

2.4.4 Encourage the international exchange of people with PWS and of those involved with the care of people with PWS.

Article 3. Members

3.1 The IPWSO membership is normally restricted to constituted national PWS associations;

3.2 However, unincorporated PWS associations, consisting of a group of parents or professionals, whose intention it is to constitute their PWS association in due course, may also apply for associate membership. In countries where regional PWS associations are established but no national associations exists, an agreed upon national association may represent them in the IPWSO.

3.3 The Board may create other categories of associate members that shall not be entitled to vote.

Article 4. Admission to membership

4.1 Applications for admission to membership must be made to the Board of the IPWSO for approval.

4.2 Membership of the Organisation with the rights and obligations pertaining thereto, will not be finally granted until such time as the annual membership fee is paid, as stipulated in Article 12 of the Statutes.

4.3  The procedures and qualifications for admission are at the discretion of the board.

Article 5. Resignation and expulsion

5.1  Loss of membership may result either from resignation or expulsion.

5.2  Resignation must be notified by registered letter to the Board by the 30th June, being six months before the end of the year.

5.3  A member may be expelled from the IPWSO by a three-quarters majority of members of the Organisation at a General Meeting, if its actions are acknowledged to have been, in important matters, continuously inconsistent with the corporate object of the Organisation. The board shall submit a request for expulsion to the General Meeting, together with a dossier setting out the facts with which the member is reproached, and containing the latter’s explanations.

5.4  Notification of the expulsion shall be made by registered letter within fourteen days of the General Meeting’s decision, it becomes effective as from the date of receipt of the said notification.

5.5  The member’s financial obligations to the Organisation up to the date of its resignation or expulsion shall, however, remain due by the member.

5.6  No out-going member shall have any claim whatsoever on the assets of the Organisation.

Article 6. Constituent bodies of the Organisation

The constituent bodies of the Organisation are as follows:

6.1  the General Meeting

6.2  the Board

6.3  the President

6.4  the Treasurer

Article 7. General Meeting, Composition, Voting

7.1  The members of the IPWSO shall each appoint two representatives to take part in the proceedings of the General Meeting. The two representatives shall be:

7.1.1 One or two to be a parent, relative, or guardian of a person with PWS - ”parent representative”

7.1.2  a professional, with specialised knowledge of, and interest in, PWS (i.e. medical, social, psychological, educational and/or juridical) - ”professional representative” who need not be a member of that member association.’

7.2  Each member country shall be entitled to one vote. The associate members may attend the General meeting but are not entitled to vote.

7.3  The General Meeting is vested with full powers in order to achieve the objectives of the Organisation.

7.4  The President or, in his/her absence the Vice-President, is appointed Chairman of the General Meeting.

7.5  The General Meeting deals with all matters that do not fall expressly within the competence of the Board, in particular:

7.5.1 appointment of the President and the Board members;

7.5.2 approval of budget, accounts, financial;

7.5.3  determination of membership fees;

7.5.4  modification of statutes;

7.5.5  expulsion of a member;

7.5.6   dissolution of the Organisation.

7.5.7   matters referred to it by the board or submitted by a member.


7.5.8  appointing up to two patrons whose appointments will be for their lifetime unless they resign.


7.6  A general Meeting shall preferably be held at least every three years, as an Ordinary General Meeting called by the Board, but always  in conjunction with the International Conference.

7.7  An Extraordinary General Meeting may be convened by the Board at any time. It must be convened when requested in writing by three or more members of the Organisation. or by the auditor.  Due to the geographical spread of its members, these meetings may be held by fax or any other suitable electronic method.

7.8  Each member shall be advised of the date and place of the Ordinary General Meeting or Extraordinary General Meeting at least 90 days before it shall occur. Any proposals which members may wish to have included on the agenda, including nomination for election to the Board, must be submitted to the President at least 60 days prior to the date of the meeting. The agenda, report of activities and financial report shall be sent out at least 30 days before the date of the meeting.

7.9  In addition to the representatives, the members are entitled to invite observers to the General Meeting.

7.10  The rules relating to quorum and to the establishment of a majority in a General Meeting are the following:  

7.10.1 A quorum is established if one half of the total number of paid-up members of the Organisation  are represented at the Meeting. If the total number is uneven, then the quorum will be the greatest number thereto.  Thirty days before a General Meeting, the auditors will provide the President with a list of paid-up members, which list will be binding on the General Meeting.


7.10.2  Unless otherwise stated in the statutes or by law, all resolutions will be taken by a simple majority of members present and represented with the Chairman having a casting vote.


7.10.3  Voting shall be carried out by paid-up members only and by a show of hands - but the Chairman of the Meeting may impose a vote by ballot and must do so if requested by at least two members.


Article 8. The Board 

8.1  The board is elected by the General Meeting. It is composed of the President, the Vice-President, the Treasurer, the Secretary, and at least one other representative.  A board member does not necessarily have to be a parent, but at least half the Board should be parents.

8.2  So far as possible the Board should represent different continents. The General Meeting shall elect at least eight members. The Board shall have the right to co-opt members, but the maximum number of Board members shall not exceed ten. The Board has the right to appoint consultants and staff, honorary or otherwise, whose term shall run until the first meeting of a newly elected Board, after which such appointment shall either lapse or be renewed.’

8.3  The Board should preferably meet at least once a year. Meetings may also be held by fax, telephone or electronic means at the discretion of the President.  At the commencement of his/her term, the President shall propose to the Board guidelines and policies for the functioning of IPWSO and the Board. Until the Board has approved the necessary resolution, current guidelines and procedures shall remain in force. The Board may amend these from time to time.


8.4  The Board's mandate shall be valid for a period of three years, ie, until the statutory General Meeting that will be held every three years during the International PWS Conference.  This mandate shall be renewable for a maximum of one more mandate period, ie three years.  If the International PWS Conference should be brought forward, or postponed, the mandate will run accordingly until the General Meeting is held at the Conference.  


8.5  The office of member of the Board carries no remuneration.


8.6  The Board shall be vested with all powers of management and administration necessary for the operations of the Organisation, which are granted to it by the General Meeting.  The General Meeting can also delegate special powers to it.  The Board shall delegate an ex-officio representative to sit on the organisation committee of IPWSO's conferences.


8.7  The Board may delegate the day-to-day management or part of it to the Organisation's Secretary, to one of the Board's members, or to outside specialists.


8.8  The Board shall prepare the work of the General Meetings and in particular the Activities' Report and the Budget, as well as update a strategic plan for IPWSO.


8.9  The proceedings of the Board shall be valid only if two-thirds of its members are present, or if those present hold the proxy of absent members.  Decisions shall be carried by a majority vote of the members' directors present or represented with the President having the casting vote.

8.10 Each member of the Board shall be entitled to one vote.

8.11 An exceptional voting procedure by correspondence, fax or electronic means at the discretion of the President shall be allowed

8.12 The Board will be responsible for keeping the accounts and will have the duty of accepting payments which are submitted to it on behalf of the Organisation and will administer the funds of the Organisation in accordance with the instructions of the General Meeting. The Board designates the persons amongst its directors who are authorised to sign for the Organisation.

Article 9. The President and the Vice-President

9.1  The President of the IPWSO shall be a parent or professional and be elected by the members of the General Meeting. The outgoing President shall be eligible for re-election for a maximum of one more mandate period i.e. 3 yrs. The President shall also be Chairman of the Board.

9.2  He/she will ensure the implementation of the Board’s decisions and represent the IPWSO vis-a-vis third party parties in regard to all acts binding the Organisation, without being required to produce evidence of his/her powers.

9.3  A Vice-President shall be elected under the same conditions. He/she shall replace the President in the event that the latter is unable to act.

9.4  Actions at law entered as plaintiff as well as defendant are instituted in the name of the Organisation by the Board represented either by the President or by the Vice-President.

9.5  The offices of President and Vice-President carry no remuneration.

Article 10. Treasurer

10.1  The Treasurer shall be responsible for ensuring that proper accounts and financial records of IPWSO are kept. The audit of the operations of the Organisation shall be carried out by the auditors appointed by the General Meeting.  If any auditor should resign or be unavailable for any reason, the Board shall appoint a replacement.

10.2  He/she shall report to the Board and to the Ordinary General Meeting on the completion of their duties.

Article 11. Accounting Period, Budget and Membership Fees

11.1  The Board shall draw up a financial report on the previous accounting period and the budget for the current period. Both shall be submitted by the Board to the General Meeting for approval.

11.2  The accounting period financial year starts 1st January, and runs for the calendar year.

11.3  An annual membership fee shall be payable by the members of the Organisation  at a time and for an amount which will be fixed by the Ordinary General Meeting which power may be delegated to the Board.

Article 12. Amendments of statutes and dissolution

12.1   Amendments to these Statutes and the dissolution of the Organisation may be decided upon at single General Meeting upon proper notice.   These may be Ordinary or Extraordinary General Meetings, convened in accordance with Art. 7.

12.2  Amendments to the Statutes or the dissolution of the Organisation require approval by three-quarters of the members present at the Ordinary or Extraordinary General Meeting.

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