PKD INTERNATIONAL Articles of Association

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1 1. Name and legal form. PKD INTERNATIONAL Articles of Association The name of the Association is PKD International short form for Polycystic Kidney Disease International (PKDI). PKD International is a non-profit, non-governmental association which will carry out its activities internationally. 2. Location. PKD International s registered office is to be situated in Geneva, Switzerland. Its location may be moved to such other place as decided by the Executive Board. Further offices may be established. 3. Purpose and scope. PKD International is a global network of patient organisations created to fight all forms of Polycystic Kidney Disease (PKD). The purpose of PKD International is to enhance the lives of those it affects worldwide. Note: Patient support is not part of the organization. That is done within the national organizations. 4. Mission statement. PKD International will achieve its purpose through the following activities (non conclusive): Supporting open communication and exchange of ideas between doctors, researchers, other health professionals and patients Promotion and facilitation of relevant educational programmes Promotion of research into PKD Encouraging patient involvement in global research Facilitating collaborative fund raising Supporting the creation and development of local PKD patient groups Communicating and lobbying international governments and other relevant organisations to promote the interests of people with PKD Co-operation with other related non-profits, charities, voluntary and statutory bodies. 5. Membership. Membership is open to all individuals and organisations working to support those affected by PKD The number of members is unlimited. 1

2 PKD International maintains a register of members. The assembly of Members includes: Full Members, Honorary Members and Associate Members. Only Full Members have voting rights. Honorary Members and Associate Members have no voting rights. The Executive Board will decide on the election of members. Full members must be legally constituted as non-profit patient groups or established as subsidiaries of legally constituted non-profit organisations established to provide patient support. Honorary members are individuals or legal entities who have been granted membership in recognition of their special achievements within the field of PKD. Associate members are individuals or legal entities who promote and support PKD International, because of their expertise, knowledge or resources. The Executive Board may recommend the establishment of sub-committees whose members may be drawn from the PKDI membership or outside. 6. Termination of membership. Membership is terminated if the member concerned: - gives written notice of resignation to PKD International ; - dies if an individual member, or ceases to exist if an organisation; - is six months in arrears in paying the relevant subscription (if any); - is removed from membership by resolution of the Executive Board on the ground that in their reasonable opinion the member's continued membership is harmful to PKD International. Such a measure may only occur after notifying the member in writing and considering the matter in the light of any written representations or justifications which the member concerned puts forward within 14 clear days after receiving notice. Membership of PKD International is not transferable. 7. General assembly. The minimum number of Member Associations that must be present to constitute a General Assembly meeting will be four. Each full member will appoint one official representative to the General Assembly. Each representative may be assisted by advisors, but only the fully authorized representative has the right to vote at meetings. There is only one vote for each full member. If equal numbers of votes are cast for and against a resolution, whether on a show of hands or on a poll, the president of PKD International, or the chairman 2

3 of the meeting, duly mandated by the president, shall be entitled to a casting vote in addition to any other vote he or she may have as a member. Honorary and associate members attend General Assembly meetings but with no voting rights. They may be invited on the case by case basis to attend Executive Board meetings, if the Executive Board so decides. The members of the General Assembly will meet at least once per year at an Annual Meeting and at any duly convened extraordinary meetings of the General Assembly. The General Assembly will be responsible for the appointment of the Executive Board. By resolution carried by a simple majority, an Executive board Member may be removed from office at a General Assembly meeting. On the request in writing of one full member to the President, the President shall call an extraordinary meeting. The General Assembly will have the power to amend, modify or replace the Articles of Association of PKD International. Any proposed amendment must be submitted in writing to the President who must distribute it to each member at least four weeks in advance of the meeting at which the amendments will be considered. Any change to the Articles of Association requires a simple majority of votes cast. Voting at General Assembly meetings may be in person or by proxy. Electronic votes are authorized. Decisions are taken by a simple majority. The General Assembly will determine the membership fee. The financial liability of the members (full member, associate member, and honorary member) is limited to the payment of the membership fee(s). 8. Executive Board (Board of Directors). The Executive Board: a) The members of the executive board are the directors of PKD International. b) The members of the Executive Board shall serve without compensation. c) Each member of the Executive Board has only one vote. Tenure of Executive Board Members: a) Executive Board Members shall serve for a term of three years. 3

4 b) Casual vacancies on the Board may be filled by the Executive Board until the next General Assembly Meeting, when that person may be eligible for election as an Executive Board Member. Board Meetings A quorum at Board Meetings shall be one-half of the members of the Board. If equal numbers of votes are cast for and against a resolution, whether on a show of hands or on a poll, the president of PKD International, or his/her duly appointed representative, shall be entitled to a casting vote in addition to any other vote he or she may have as a member. Decisions of the Executive Board: a) Every act done or decision made by a majority of Executive Board Members present at a duly held meeting at which a quorum is present will be regarded as an act by the Board. b) Actions shall be able to be taken without a meeting of the Board, if all Board members consent in writing. Responsibilities and Powers of the Executive Board: a) The Board shall: i) Provide leadership and direction of PKD International ii) Facilitate communication among the member organisations iii) Oversee the activities of PKD International and its Managing Officer b) The Board shall have the powers to: i) Select and remove the Managing Officer and other employees of PKD International ii) Prescribe such powers and duties for them as is consistent with law iii) Fix their compensation and require from them security for faithful service iv) Conduct, manage and control the affairs and business of PKD International v) Make such rules and regulations as is consistent with the law and Articles of Association vi) Inspect the books and records of PKD International vii) Recommend and appoint the members of the sub-committees. 9. Managing Officer. The Board shall have the power to appoint and remove a Managing Officer on such terms as it sees fit and to vary these terms from time to time. The Managing Officer shall attend to the daily leadership and administration of PKD International. The Board shall also have the power to appoint and remove employees of PKD International if need may be. 10. Directors. 4

5 a) The Directors of PKD International will comprise at a minimum: i) the President ii) the Vice-president iii) the Secretary iv) the Treasurer There may be several vice-presidents if the General Assembly so decides. Assistant Secretaries and Assistant Treasurers may also be elected by the General Assembly as need may arise. b) The Treasurer may not serve concurrent as President. c) Any Director may resign at any time by giving written notice to the Board. d) Casual vacancies for Directors are to be filled by the Board and ratified at the next General Assembly Meeting. 11. President. The President will: a) Preside at Board meetings b) Represent PKD International at appropriate occasions 12. Finances. The financial year is the calendar year. The Executive Board will adopt a budget each year and oversee the finances of PKD International. The finances should be audited annually by a qualified auditor. PKD International may raise funds from its member organisations. PKD International may raise funds directly from individuals, groups or international organisations in member countries with the permission and cooperation of the country-specific member organisation if there is one. Any note, mortgage, evidence of indebtedness, contract, share certificate, conveyance or other instrument entered into by PKD International shall be valid and binding on PKD International only when signed by two duly appointed directors. 13. Meetings. The schedule of activities will include at least one General Assembly meeting and two executive board meetings each year. Electronic meetings are authorized. Each Member Association will be given the opportunity to host meetings at a venue of their choice; 5

6 14. Management of Meetings. The role of Chair and minute taker will be designated in advance and organised on a rotating basis. The minutes of each meeting will be recorded and maintained in a minute file. The Chair will be responsible for setting the agenda (in consultation with other Member Associations), disseminating relevant papers, inviting speakers, organising the venue/refreshments and chairing the meeting. Unless otherwise designated, the Chair will be responsible for taking forward any actions arising from the meeting. 15. Resources. Should funding be required to support projects discussed and supported at meetings, it will be sought from an external source or from members. This will be purely at the discretion of the membership; should the decision be taken not to contribute, this will have no bearing on that member s future involvement with PKD International. 16. Declaration of Interests. Member Associations are required to declare interests which are relevant and material to any discussion during meetings of PKD International. 17. International Scientific Committee. An international Scientific Committee will be established by the Board to provide expertise to PKD International on scientific and medical issues. The international scientific committee is composed of scientists, physicians, and experts proposed by member associations and approved by the Executive Board. The International Scientific Committee is to meet at least once a year upon request of its chair or the Executive Board of PKD International. Electronic meetings are authorized. 18. Dissolution. If PKD International is wound up or dissolved and after all its debts and liabilities have been satisfied there remains any property, it shall not be paid to or distributed among the members, but shall be given or transferred to some other organisation or charity having identical or similar objects. 19. Agreement. The Articles of Association are agreed on Between: Signed for and on behalf of: The founding members PKD Familiäre Zystennieren e.v Association PKD Suisse 6

7 Association Polykystose France (APKF) The Polycystic Kidney Disease Charity UK Associazione Italiana Rene Policistico (AIRP) Selbsthilfegruppe Zystennieren Österreichs Familiäre Schweizer Vereinigung für Patientinnen und Patienten mit angeborener polyzystischer Nierenerkrankung 7

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