Statutes

Adopted in teleconference at the 25th of September 2011.
Amended by the General Assembly in Duisburg on 26th of August 2016.
Amended by the General Assembly in teleconference on 13th July 2022.

Table of Contents

Article 1 – Name and seat ^

The name of the federation is Aniridia Europe. It has its seat in Norway, in the city of Oslo. The federation will operate according to the Norwegian Law. For the purpose of pursuing its objectives, Aniridia Europe may conduct activities and establish offices anywhere it wants to at any time, primarily in Europe. Only Aniridia Europe, by its governing bodies, can establish Aniridia Europe offices. In the event of an office being in another country, this Aniridia Europe office will operate according to the laws of the country in question. A change of the seat of the federation to another country requires a decision by the General Assembly, as well as a change of these statutes according to the rules described in article 6.

Article 2 – Nature of the organisation ^

Aniridia Europe is a European non-governmental and non-profit federation which consists of national legally recognized aniridia organisations, non-legally recognized support groups and networks for and by people diagnosed with aniridia and their families, as well as individuals diagnosed with aniridia and their families. Aniridia Europe is politically and religiously neutral. Aniridia Europe welcomes members primarily from all the countries which geographically belong to Europe, but also from other countries, provided that the applicants support the objectives of Aniridia Europe.

Article 3 – Objectives ^

The main objective of Aniridia Europe is to create a platform for cooperation between European national associations, support groups and networks, individuals with aniridia and their families, as well as researchers and professionals working with aniridia and related conditions. In more detail, the objectives of Aniridia Europe are to:

  • encourage and strive for inherent dignity, individual autonomy including the freedom to make one’s own choices and independence of persons; non-discrimination; full and effective participation and inclusion in society; respect for difference and acceptance of persons diagnosed with aniridia as part of human diversity and humanity; equality of opportunity; accessibility; equality between men and women; respect for the evolving capacities of children diagnosed with aniridia and respect for the right of children diagnosed with aniridia to preserve their identities,
  • keep up with and support medical research on aniridia and other related conditions and spread the information to the members of Aniridia Europe,
  • promote and improve exchange of knowledge and expertise between practitioners and researchers concerned with aniridia and related conditions,
  • investigate social, political and cultural matters connected with the welfare of persons diagnosed with aniridia and related conditions, as well as to promote and improve the exchange of information on such matters,
  • support the establishment and development of national associations of aniridia and related conditions and promote co-operation at an international level between national associations for persons diagnosed with aniridia and related conditions, as well as non-legally recognized associations, networks and individuals who are diagnosed with aniridia and their families,
  • co-operate with or be members of other national and international organisations and institutions that have the objective to further the welfare of individuals diagnosed with aniridia,
  • gather funds and collect, manage, use and distribute contributions, legacies and donations of their benefits, for the purpose of stimulating and promoting both medical research of aniridia and related conditions and the welfare of persons diagnosed with aniridia and related conditions,
  • serve as a meeting point for any and all implicated groups (people with aniridia, their families, researchers and scientists, doctors, nurses, health care workers, etc.)
  • participate in media and media events in order to keep the general public as well as public and private institutions, European or international, aware of aniridia issues and concerns,
  • engage in other activities not specifically contemplated in these statutes, but which may favour the promotion, defense of rights and social and labour inclusion of people diagnosed with aniridia and related conditions.

Article 4 – Membership ^

Aniridia Europe has three categories of membership: full, affiliated and honorary membership.

Article 4.1 – Full Membership ^

European national legally recognized aniridia organisations will be admitted to Aniridia Europe as full members with full member rights in the General Assembly and in the activities of the federation. To become full members, organisations must meet the following criteria:

  1. Must be non-profit and non-governmental.
  2. Must have a legal status appropriate to the country of origin, with a written constitution and/or statutes. If no appropriate legal status exists in the country of origin this criterion may be waived at the discretion of the Board of Directors.
  3. Must be a national organisation.
  4. Must demonstrate commitment to persons with aniridia in their guiding statements, such as their vision, mission or organisational objectives, and their activities. Typically the organisation’s mission will be to respond to the needs of persons with aniridia in a specific country, supporting and representing them. This governance structure must be described and illustrated in a written letter accompanying the organisation’s application.
  5. Must be member driven, i.e., the needs and views of persons diagnosed with aniridia drive the organisation’s strategy, policies and activities in a significant way and the organisation is capable of representing the needs and views of these persons. Organisations achieve this in different ways. Organisations must demonstrate that the majority of the organisation’s voting members are persons diagnosed with aniridia and their family members and that the majority of the organisation’s governing body are persons diagnosed with aniridia and their families.

Only one national legally recognized aniridia organisation per country is allowed as a full member. In case there are several aniridia organisations in a country, these organisations should first of all try to merge. In case this is not possible, the Board of Directors has the right to decide which organisation will be allowed to be a full member.

Article 4.2 – Affiliated Membership ^

In case there is not a national legally recognized aniridia organisation in the country in question, but an informal association or network, this association or network or separate individuals can apply for an affiliated membership. Affiliated members have the right to attend and speak in Aniridia Europe’s activities but not to vote and submit suggestions in the General Assembly.

The foundation of a national legally recognized aniridia organisation in the country in question will result in the termination of the existing affiliated membership in the event that this national organisation is admitted to Aniridia Europe as a full member.

Article 4.3 – Honorary membership ^

The General Assembly, upon suggestion from the Board of Directors, has the right to award people with an honorary membership, which gives the right to attend and speak in Aniridia Europe’s activities but not to vote and submit suggestions in the General Assembly. This type of membership is awarded to a person who has distinguished himself/herself by making extraordinary contributions to improve the situation of persons diagnosed with aniridia.

Article 4.4 – Membership approval and fees ^

Membership adherence means fully complying with these Statutes as well as paying the annual membership fee, the amount of which is set by the General Assembly. The membership application, stating the level of achievement of the criteria required for being accepted as a member, must be sent in writing to the Board of Directors. The Board shall decide freely on membership applications.
The decision to apply for membership in the federation lies with the board of each national organisation, with the coordinator of each informal association or network, or with each individual in case no kind of association or network exists in the country in question.

Article 4.5 – Termination of membership ^

An organisation’s membership may be terminated by a written letter of resignation addressed to the Board of Directors, legal liquidation proceedings or dissolution of the member association. The same rules apply to affiliated members, i.e. informal associations, networks and individuals who are not full members.

Article 4.6 – Revoking of membership ^

The Board of Directors, after due deliberation, may recommend or decide on the suspension or termination of any organisation’s membership as well as affiliated membership in Aniridia Europe. Sufficient cause for suspension or termination shall be:

  • wilful violation of the statutes or any rule, policy or practice duly adopted by the General Assembly and/or the Board of Directors of Aniridia Europe,
  • any other conduct materially prejudicial to the interest of Aniridia Europe,
  • activities in conflict with the objectives of Aniridia Europe,
  • failure to comply with financial commitments to Aniridia Europe. Any member in arrears for more than one year with the settlement of financial commitments (most specifically membership fees) will be considered as having automatically terminated their membership. In the event of the member having difficulties in complying with financial commitments, the member may appeal to the Board of Directors. The conditions under which membership in Aniridia Europe can be maintained will then be reassessed ad hoc.

Membership can be terminated if the member is involved in any activity considered detrimental to the best interests of Aniridia Europe. The member concerned shall be informed and given the opportunity to hear the evidence and to defend their actions in writing. Any decision regarding an exclusion of this nature shall have to be adopted by the Board of Directors, with at least a three-fourths majority of the Board of Directors. Full members have the right to appeal at the next General Assembly, in which case any decision adopted in favour of revoking the exclusion shall have to be adopted by a three-fourths majority of the members attending.

Article 5 – The organs of the Federation ^

The organs of the federation are the General Assembly, the Extraordinary General Assembly, the Board of Directors, the Scientific Committee, Committees on different topics, the Nominating Committee and the Auditor. The governing and supreme bodies of the federation are the General Assembly and the Extraordinary General Assembly, as well as the Board of Directors, which acts as an executive body between the assemblies.

Article 5.1 – General Assembly ^

Article 5.1.1 – Composition and quorum of the General Assembly ^

The General Assembly is one of the supreme organs of the federation, and it is comprised of all members, i.e. full, affiliated and honorary members, whereof only full members have the right to vote and to submit suggestions. All categories of members have the right to attend and speak at the General Assembly.

The General Assembly is also comprised of the members of the Nominating Committee and the Auditor, as well as the persons who are members of the Board immediately before commencement of the General Assembly. In addition to this, the Board of Directors can invite guests to participate at the General Assembly.

The Ordinary General Assembly shall be valid when a minimum of thirty percent of full members are present or represented by proxy.
If this quorum is not reached, a second summoning shall be done and the new General Assembly shall be valid regardless of how many full members are present or represented by proxy.

Article 5.1.2 – Summoning of the General Assembly ^

The Ordinary General Assembly shall meet physically or by any appropriate means of communication, including telephone or electronically, at least every two years.

The members of the federation shall be convened by the President, at least three months before the event. In case a second summoning is needed because the General Assembly has not reached the quorum, the members shall be convened at least one month before the event.

Full members may provide suggestions related to the development of the federation, in terms of new activities or organisational matters, as well as matters regarding these Statutes. These suggestions are to be submitted as motions, which should be handed in to the Board of Directors in writing at least two months before the General Assembly.

The agenda of the General Assembly, the Activity Report, the Financial Report, the recommendations from the Auditor, the proposal of activities from the Board of Directors, the possible motions from full members and the budget for the following mandate period must be communicated to the members at least fifteen days before the fixed date of the meeting.

Article 5.1.3 – Agenda of the General Assembly ^

The Agenda of the General Assembly is set by the Board of Directors and shall have at least the following content:

  • Opening of the meeting
  • Approval of the summoning to the General Assembly
  • Constitution of the meeting by the election of:
    • a chairperson of the meeting
    • a secretary who shall keep the record of the meeting
    • two persons to check and sign the minutes
    • two persons to serve as tellers if needed
      establishment of the electoral register
  • Approval of the agenda
  • Approval of the Activity Report, of the Financial Report, and presentation of the Auditor’s Report and recommendations
  • Decision about granted discharge for the outgoing Board of Directors
  • Proposals from the former Board and motions from full members
  • Decision about the amount of the membership fee
  • Approval of the activities and budget for the following mandate period
  • Decision about the number of members of the Board of Directors
  • Elections of:
    • the President
    • the Vice-President
    • the Treasurer
    • the Secretary
    • possible other trustees
  • Election of the Nominating Committee
  • Election of an Auditor
  • Closing of the meeting

Article 5.1.4 – Procedures of the General Assembly ^

The chairperson of the General Assembly has the task of chairing the meeting and has the right to restrict the speaking time of all categories of members, if needed.

Each full member organisation appoints a representative for the General Assembly, as well as a deputy representative. Individuals who are members of Aniridia Europe’s Board of Directors are not eligible to be representatives.

Each full member organisation has one vote at the General Assembly.
Voting by proxy is allowed in the General Assembly. Only full members’ representatives can hold a proxy from another full member association, the proxy containing information about which person is allowed to vote on behalf of the absent representative, which General Assembly is concerned, as well as a signature and name specification of the absent representative. Any full member representative may not hold more than one proxy.

The decisions of an Ordinary General Assembly are made by simple majority, except in the cases provided for in articles 4.6 (Revoking of membership), 6 (Change of these Statutes) and 7 (Dissolution of the federation). In case of a tie, the General Assembly Chairperson draws lots in order to cast the deciding vote.

Election of persons shall be performed by secret ballot, if there is more than one nominated candidate to a specific position.

Article 5.1.5 – Elections of Trustees in the General Assembly ^

The General Assembly is to elect the Board of Directors, composed of 4 to 9 members, and to decide on the numbers of Directors. Each full member association can have no more than one seat in the Board. The General Assembly is also to elect the Auditor and the Nominating Committee.

Members of the Board of Directors are recommended to the General Assembly by the Nominating Committee. All full members of the federation may apply directly to the Nominating Committee to suggest and support candidates for the Board of Directors at least two months before the General Assembly.
The same principle applies to the recommendation of candidates for the task of Auditor or candidates for other relevant positions, if the Board of Directors assigns the Nominating Committee to make such recommendations.

Only nominated candidates from full member associations are eligible for the Board of Directors and must be supported by their respective full member association. The Nominating Committee has the right to request a formal support letter from the full member association.
Nominations of candidates from other full member associations can be made “from the benches” in the General Assembly, provided that the candidate is supported by his/her respective full member association, whose representative at the General Assembly is to confirm this support.

Article 5.1.6 – Guidelines and record of the General Assembly ^

The Board of Directors can develop guidelines for the General Assembly to be adopted by the General Assembly.

A record of the meetings shall be maintained.

Article 5.2 – Extraordinary General Assembly ^

If necessary, the Board of Directors may convene an Extraordinary General Assembly in order to modify the Statutes, to dissolve the federation or simply to address important issues that need to be decided urgently, according to the agenda of the Extraordinary General Assembly. An Extraordinary General Assembly may also meet at the request of more than half of the members of the federation.

The quorum for an Extraordinary General Assembly is more than half of the members, those physically present plus those represented by proxy. If this quorum is not reached, a new Extraordinary General Assembly shall be convened, under the same conditions as above, except the quorum, which can then adopt any final and valid decision regarding the proposal.

Other than these exceptions, the Extraordinary General Assembly shall follow the same provisions as prescribed for the General Assembly for its composition (Art. 5.1.1), summoning (Art. 5.1.2) and procedures (Art. 5.1.4), where applicable.

A record of the meetings shall be maintained.

Article 5.3 – Board of Directors ^

Article 5.3.1 – Constitution of the Board of Directors ^

The Board of Directors is the administrative body of Aniridia Europe. In general, the Board is vested with all powers not exclusively reserved for the General Assembly.
Each full member association can have no more than one seat in the Board.
Each Board member shall act as a representative of the aniridia community, and not as a representative of a single country or member organisation.

The Board of Directors is composed of 4 to 9 members, elected by the General Assembly by the full members of the federation. The minimum requirement for the composition of the Board of Directors is that it is comprised of:

  • a President, the primary representative of the federation
  • a Vice-President, the President’s deputy, acting as President in the absence of the permanent President
  •  a Treasurer, entrusted with establishing and maintaining, or empowering somebody under his/her responsibility, the accounts of the federation
  • a Secretary, whose duties include the maintenance of administrative records.

Each task shall have its own person assigned, although when necessary, any one person may be entrusted with more than one of these tasks.
Mandates are for a period of two (2) years and are renewable.

The Board of Directors may, if needed, invite advisors, experts and external consultants within the framework of the Board’s tasks. Advisors, experts and external consultants have the right to speak at Board meetings but do not have the right to vote at the same.

In case of vacancy, the Board of Directors can co-opt a delegate to sit on the Board until the next General Assembly. The mandate of the person so appointed shall expire at the time that would normally expire for the original Board member.

Article 5.3.2 – Board meetings ^

The Board of Directors shall meet, physically or by any appropriate medium, including telephone or electronically, upon the initiative of the President. The President will summon the other Board members at least 15 days before the meeting.

Voting by proxy for another member of the Board of Directors is authorized. Proxy shall be handed in to the President in writing before the meeting. Each member of the Board may not hold more than one proxy.

The Board meeting is validly constituted when more than half of Board members are present. Decisions are taken by simple majority of the votes cast by members present or represented. In case of a tie, the President casts the deciding vote.

A record of all Board meetings shall be maintained.

Article 5.3.3 – Fees for Board Members ^

Board members may receive payment for their Board work if decided by the General Assembly. A Board member’s justified expenses will be reimbursed, unless the Board of Directors decides otherwise in specific cases.

Article 5.4 – Scientific Committee ^

The Scientific Committee shall consist of at least three and at most fifteen persons. Members of the Scientific Committee shall be distinguished experts either as practitioners or researchers within the field of aniridia. Primarily ophthalmologists and geneticists are eligible to become members of the Scientific Committee. The Scientific Committee is designated by the Board of Directors. The Scientific Committee elects a Chairperson among its members. A second member of the Scientific Committee may be elected Vice-Chairperson. During its mandate, the Board of Directors can designate new members to the Scientific Committee upon recommendation by the Chairperson.

The Board of Directors may designate one or two of its members to maintain the contacts with the Scientific Committee, to provide a secretariat if needed and to participate in meetings of the Scientific Committee.

The objectives of the Scientific Committee are:

  • to provide advice and recommendation to the Board of Directors on the direction of research that should be followed and therefore which research projects could be funded by Aniridia Europe or recommended for funding to funding agencies by Aniridia Europe,
  • to foster communication between research groups and medical professionals across Europe and the rest of 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,
  • to be proactive by generating proposals for research and charitable funds for projects performed by the scientific groups that the Scientific Committee members are part of themselves (care regarding conflict of interest must be exercised in this case),
  • to be highly involved in the organisation of European Aniridia Conferences.

Article 5.5 – Committees on different topics ^

The General Assembly or the Board of Directors can, if needed, appoint Committees in order to specialise on different topics. The definition of the objectives of a Committee and the constitution of it is determined by the Board of Directors.

Article 5.6 – Nominating Committee ^

The purpose of the Nominating Committee is to make recommendations to the General Assembly regarding the election of one or several persons as Auditor, to the composition of Aniridia Europe’s Board of Directors and, upon assignment from the Board of Directors, also to other relevant trustees. The Nominating Committee is also to recommend remuneration for the Board of Directors, if needed. Its guiding principle is to choose the best candidate to fill the vacancy, while endeavouring to seek a balance between the personal and professional qualifications of a nominee and the representational needs, including gender, geographical balance and balance between persons diagnosed with aniridia and their families. The Nominating Committee shall consist of at least three and at the most five persons. One of these persons is assigned as Chair of the Nominating Committee and is responsible for summoning the rest of the Committee and leading the work of the Committee. Eligible as members of the Nominating Committee are honorary members and representatives from full member associations.

Article 5.7 – Auditor ^

The Auditor is elected among the full members of the federation from the same country where Aniridia Europe’s accounts are registered, for a period of two years, which is renewable. His or her role is to watch over the regularity of the federation’s accounts and make a report to the General Assembly. The Auditor also recommends the General Assembly whether or not to adopt the report and the accounts for the past financial year. The Auditor’s term ends at the General Assembly deciding on the accounts of the financial year in which this period of two years expires. If the General Assembly so decides, more than one Auditor can be elected as well as a Deputy Auditor.

Article 6 – Change of these statutes ^

Aniridia Europe’s statutes may be amended, repealed or altered, in whole or in part, with a three-quarters majority of the General Assembly or Extraordinary General Assembly attending or represented by proxy and entitled to vote. Amendments may be brought before the General Assembly by the President at the request of either the Board of Directors or by motion from at least one full member. The request must be in writing.

Any proposed amendment must be received by the President at least two months prior to the General Assembly or Extraordinary General Assembly. A copy of any amendment proposed for consideration shall be sent to all members at least fifteen days prior to such a meeting.

An alteration of the statutes will not come into effect until the alteration is registered with the Norwegian Authorities.

Article 7 – Dissolution of the Federation ^

The federation can be dissolved by a decision of a three-quarters majority of the General Assembly or the Extraordinary General Assembly attending or represented by proxy and entitled to vote, in two consecutive meetings, whereof one has to be a regular General Assembly. The provisions of article 6 in these statutes 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. In case of a dissolution of Aniridia Europe, one or more liquidators shall be appointed by the General Assembly. The liquidators are subject to the provisions concerning the appointment, suspension, dismissal and supervision of Board members. During the liquidation the other provisions of the statutes remain in force as far as possible. The liquidation ends when the liquidators are unaware of the existence of any further assets. Any assets shall be distributed in accordance with the wishes of the General Assembly. In case of a lack of specific instructions from the General Assembly in this matter, any assets shall be distributed in accordance with the legal ramifications of the Norwegian Law. On completion of the liquidation, the books and documents of the dissolved federation shall remain in custody of the person designated by the General Assembly or the Extraordinary General Assembly for that purpose for ten years. In accordance with the statutes, the credit balance after liquidation shall be used for those purposes to be determined by the General Assembly or the Extraordinary General Assembly in keeping with the objects of the federation.

Article 8 – Final provisions ^

Any and all cases not foreseen by these statutes shall be dealt with in accordance with accepted international non-profit associations’ best practice, as interpreted by the Board of Directors.