In many countries the parents/carers of people with Cornelia de Lange Syndrome (CdLS) have formed national groups with the aim of supporting people with CdLS.  They have found that they share a mission – to offer help, give hope and reach out to people with CdLS and those who love and care for them.

In Los Angeles, California in 2001 the national groups of many of those countries formed an association named the International Federation of National CdLS Support Groups to further that shared mission.

The objectives of the Federation are:

  • to liaise with the International Scientific Advisory Committee (‘SAC’) and to manage the SAC for the benefit of all member countries
  • to act as a forum of best practice for support group services for people with CdLS, including holding an International Conference every two years
  • to act as a resource base for the wider family of people affected by CdLS throughout the world for both research and for families moving from one country to another.

Articles of constitution

ARTICLE 1 (The Federation)

  • The Federation operates through the Council and the Federation Executive. The Federation is politically neutral and has an unlimited life. The liability of the Council, Federation Executive, members, associations and institutions is limited. The Federation has its registered office at a place decided from time to time by the Council.
  • The administrative and fiscal year runs from May 1 to April 30.

ARTICLE 2 (Membership of the Federation)

The Federation consists of national associations duly admitted (“member nations”). Only national groups who have the aim of supporting people with CdLS may be admitted.   Only one national group from each country may be admitted to the Federation.


ARTICLE 4 (Applicants for admission)

An application for membership must be addressed to the Chairperson of the Council and accompanied by relevant information which gives a full picture of the applicant, including statutes, objectives, activities, number of members and other matters determined by the Council. The Chairperson will forward such an application to all members of the Council of the Federation. The Council will discuss the application and may accept it by a two-thirds majority vote. If not, the application is rejected.  

ARTICLE 5 (Termination of Membership)

  • Any member may withdraw from the Federation by sending a letter of resignation to the Chairperson of the Council, who will in turn inform Council members.  Notice of resignation will not exempt the member from fulfilling any outstanding obligations (including financial) existing at the time of the resignation.  
  • If any member fails to pay the subscription for two consecutive years that member may be considered to have resigned. Any member seriously failing in its duties towards the Federation, or acting in serious contravention of the Federation Constitution will be asked to resign upon a unanimous resolution of the other members of Council.
  • Any member who has resigned from the Federation, or has its membership withdrawn by Council, immediately loses all membership rights.

ARTICLE 6 (Subscriptions)

  • Each member nation is required to pay an annual subscription.
  • The annual subscription for a member nation shall be in an amount equal to US$3.50 per CdLS person in such member nation or such other amount as may, from time to time, be fixed by Council.
  • The member nation which is organising the International Conference is not required to pay the annual subscription for the year in which the Conference occurs. 

ARTICLE 7 (The Council)

  • The Council is the highest authority of the Federation. The Council is composed of one representative of each member nation, the Chairperson of the International Scientific Advisory Council together with the Federation Executive.  Each member nation may send a second representative to a Council meeting who may participate in the deliberations of Council but each member nation may have only one vote. 
  • The Council is presided over by the Chairperson elected in a personal capacity by the members of Council – that is the Chairperson elected by Council need not be or remain the representative of a particular national body.
  • The Council is the supreme governing body of the Federation.  The Council, among others, has the following functions. The Council:
    • determines policy, 
    • changes the Constitution  
    • admits member nations 
    • determines the members of the Federation Executive
    • appoints auditors
    • approves budgets and other proposals put forward by the Federation Executive
    • approves, on the recommendation of the Federation Executive, the annual scale of contributions of the member nation
    • decides on the host nation for future International Conferences
    • decides on proposals put forward by member nations 
    • plans the Federation program and,
    • determines where the Federation will be incorporated and have its registered office.

ARTICLE 8 (Federation Executive)

  • The Federation Executive is determined by the Council for a two year term, on a written ballot.  The term of office of the members of the Federation Executive begins at the close of the session of the Council at which they have been determined and expires at the close of the session of the Council which determines their successors.
  • The Federation Executive manages the affairs of the Federation in accordance with this Constitution and under the direction of the Council.
  • The Council will determine from time to time the composition of the Federation Executive but the Federation Executive will consist of at least four members, determined as follows:  
    • Chairperson nominated and elected in a personal capacity by the Council;
    • Immediate Past Chairperson, who shall serve as Vice-Chairperson; or a Chairperson-elect who shall act as Vice-Chairperson; and
    • A General Member nominated by the member nation who will host the next International Conference and approved by Council.
    • A Treasurer nominated and elected in a personal capacity by the Council.
  • The Federation Executive may consult with one another and reach decisions by any available means.  The decisions must be formalised in a resolution voted on by email or other communications device.
  • Resolutions are passed by a simple majority vote and the Chairperson has the casting vote. Resolutions are recorded by the Chairperson.
  • If a member of the Federation Executive should resign during the term of office, the Council may elect by email or other communications device a replacement to serve the remaining term of office.
  • The Federation Executive is responsible for implementing the decisions of Council.

ARTICLE 9 (Meetings)

  • The Federation Council shall convene a general meeting at least every two years at the International Conference.  Meetings may be convened between International Conferences. Participation of members in Council meetings may be telephonic and such meetings may be conducted telephonically or by any other communication device.
  • The Federation Executive may also convene a special meeting of the Council from time to time as the need arises, provided that
    •  all members of the Federation Executive or
    •  5 of the members of the Council request in writing or by email the calling of such special meeting.   The requisition by members for a special meeting shall state the purpose or purposes of such meeting.
  • The agenda for the Council general meeting must include: minutes of the last meeting: reports from the Chairperson and Treasurer: dates and venues of future meetings.
  • The agenda documents must be sent to all members at least two weeks before the Council meeting.
  • One representative of each member nation, each member of the Federation Executive who is not already entitled to vote because that person is a member nation’s representative and the Chairperson of the International SAC will each have one vote.  The Chairperson has the casting vote. 
  • Council decisions will be taken by a simple majority vote except in situations mentioned in Article 4 (new members), Article 5 (Termination of membership) and article 13 (Amendment to Constitution/Dissolution).  Absent members can vote by proxy providing the Chairperson is informed in writing before the beginning of the Council meeting who will vote by proxy on whose behalf.
    Council can decide on a simple majority vote to hold a written ballot on any issue.
  • The Chairperson must arrange for the minutes of a Council meeting to be taken.  Draft minutes of proceedings at a meeting shall be circulated by the Chairperson as soon as possible after the meeting and shall be refined through amendment /agreement until an agreed set of minutes has been achieved by email or other communications device.   The agreed minutes will then be circulated by the Chairperson to all members of Council.  The Chairperson of the next succeeding meeting shall sign the minutes as confirmed.

ARTICLE 10 (Allocation of Tasks)

  • The Chairperson leads the meetings of the Federation Executive and the Council.  The Chairperson may appoint a person to assist in the administration, maintaining records of resolutions and for arranging and organising meetings of the Federation Executive and the Council.  Records shall be kept of:
    • all appointments of office bearers and members of the Federation Executive and Council; 
    • the names of members of those present at Federation Executive and Council meetings or at general meeting; 
    • and all proceedings at Executive Committee meetings and general meetings.
  • The Treasurer is responsible for the sound financial management of the Federation and makes appropriate proposals to each Federation Executive meeting including the up-to-date budget and an annual report of accounts.  The Treasurer shall ensure that:
    • all moneys due to the Federation are collected and received and that all payments authorized by the Federation are made; 
    • and accurate books and accounts are kept showing the financial affairs of the Federation including full details of all receipts and expenditure connected with the activities of the Federation.
  • The general members will take on specific responsibilities to develop the Federation activities.

ARTICLE 11 (Accounts)

  • The member nation of the Chairperson shall maintain the non-financial books and records of the Federation during such Chairperson’s tenure.
  • An accounting of the Federation's finances should be provided at the beginning of each fiscal year by the Treasurer or person acting in such capacity.
  • The records, books and other documents of the Federation shall be open to inspection, free of charge, by a member of the Council or that person’s representative at any reasonable hour, provided that at least 48 hours advance notification is given to the person responsible for the records of 

ARTICLE 12 (International Conference)

  • Every two years an International Conference should be held in and organised by one of the member nations under the auspices of the Federation.
  • The member nation to host the International Conference following the next scheduled International Conference shall be chosen at the biennial Council meeting.
  • Every International Conference will aim to include a professional conference and a conference for families and follow generally the format of prior International Conferences.

ARTICLE 13 (Amendments to Constitution/Dissolution)

  • Any proposal designed to amend the Constitution or dissolve the Federation must emanate from a member nation or from the Federation Executive and such a proposal should be circulated to all Council members at least three months prior to the next Council meeting.
  • No such proposals will be adopted until receiving at least a two-thirds vote at a Council meeting.
    Should the Federation be dissolved, any remaining funds will be allocated, by decision of the Council, to an international organisation with objectives or activities close to those of the Federation or re-distributed to member nations proportionately.
  • The liability of a member to contribute towards the payment of the debts and liabilities of the Federation or the costs, charges and expenses of the winding up of the Federation is limited to the amount (if any) unpaid by the member in relation to membership of the Federation as required by Article 6.

ARTICLE 14 (Summary)

Any items not covered by this Constitution will be addressed in accordance with legal provisions and/or decisions of the Council.

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