Agenda
General Assembly
August 26th, 2016, 17.00 – 18.00
Duisburg, Germany

 

 

 

  1. Opening of the meeting
    The meeting was opened at 17.00.
  2. Approval of the agenda
    The agenda was approved.
  3. Election of the chairperson of the meeting
    Ognian Petkov was elected chairperson of the meeting.
  4. Election of the secretary of the meeting
    Anita de La Fuente was elected secretary of the meeting.
  5. Election of two persons to check the minutes and to serve as teller if needed
    Hilde Hansen and Galina Gening were elected to check the minutes and serve as tellers.
  6. Establishment of electoral register
    The electoral register was established: Bulgaria was represented by Elena Tsoneva, France by Marjorie Poeydomenge, Germany by Denice Toews-Hennig, Italy by Matteo Castelnuovo, Norway by Asbjørn Akerlie, Russia by Galina Gening, Spain by Rosa Sánchez de Vega, Sweden by Ivana Kildsgaard, UK by Katie Atkinson. Finland was absent.
  7. Activity Report 2014-2016: It was read and edited. It was added that Galina Gening attended some conferences on behalf of Aniridia EuropeThe General Assembly recommended to make a clear distinction in the report between what was actually done by Aniridia Europe and other activities that were performed by the national associations, even if they were relevant at a supranational level.
  8. Financial Report 2014-2016. 2014/15. It was examined and explained.
  9. Adoption of the report and accounts: The Activity Report and the Financial Report were adopted.
  10. Recommendations from the Auditor : The recommendations from the auditor were read and received by the General Assembly.
  11. Proposal to agenda for the General Assembly (hereafter GA) 2016 from Association GENIRIS. Revision of statutes article 5.1. The original text “Aniridia Europe is administered by a Board of Directors composed of 4 to 9 Members, elected by the General Assembly by the Members of the Federation” is to be replaced by the following text: “Aniridia Europe is administered by a Board of Directors composed at least of 4 Members, elected by the General Assembly by the Members of the Federation”.:1 vote in favour, and 8 against. The proposal was rejected.
  12. Proposal to agenda for the GA 2016 from Association GENIRIS. Revision of statutes article 5.1. The original text “Each Member Association can have no more than one seat on the Board.” is to be replaced by the following text: “Each Member Association can have at least one seat on the Board by country, 2 seat by big European countries”.vote in favour, and 8 against. The proposal was rejected.
  13. Proposal to agenda for the GA 2016 from Association GENIRIS. Revision of statutes article 5.3.1. The original text “The Board of Directors is composed of 4 to 9 Members, elected by the General Assembly by the Members of the Federation” is to be replaced by the following text: “The number of members of Board must be balanced by country and maybe by size of country : at least 1 member by country, 2 member by big European countries”.vote in favour, and 8 against. The proposal was rejected.
  14. Proposal to agenda for the GA 2016 from Association GENIRIS. Revision of statutes article 5.4. Article 5.4 is to be replaced by the following articles:Article 5.4 – Scientific Committee Article 5.4.1. Members of the SC :The Scientific Committee shall consist of at least three persons. The number of members of SC must be balanced by country and maybe by size of country : at least 1 member by country, 2 member by big European countries.Members of the Scientific Committee shall be distinguished experts who have a minimum of 5 years’ experience of Aniridia, either as a practitioner or a researcher within the field of Aniridia. Primarily ophthalmologists and geneticists are eligible to become members of the Scientific Committee.The president of AE board and two other members of AE board designated by the GA participate by right in meetings. The secretariat of the SC is provided by a member of the board of AE.
    Article 5.4.2. Election of SC :
    The Scientific Committee is elected by the General Assembly upon recommendation by the Board of Directors and the research and development Committee.

    The Scientific Committee is elected for a period of 3 or 4 years. One of the members of the Scientific Committee is to be elected Chairman of the Committee. A second member of the Scientific Committee is to be elected Vice Chairman of the Committee.Article 5.4.3.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 themselves part of (care regarding conflict of interest must be exercised in this case),
    • to be highly involved in the organisation of European conferences on Aniridia.

    Article 5.4.4. Meeting and work of the SC :

    The members of Scientific Committee shall meet at least once a year, physically or by any appropriate medium, including telephone or electronically. Meetings are convened by joint decision of the president of the board and the President of the SC. Meetings will be announced by written or mail invitation at least six weeks in advance. The agenda and any useful information regarding decisions will be attached. If necessary, an exceptional meeting of the SC may be convened by joint decision of the president of the board and the President of the SC.

    The SC maintains updated reports of its meetings and its works by the secretary of the SC. It issues a report of its activities for every 2 years by the secretary of the SC before the GA. The GA validates the action of the MSC every 2 years

    The board of AE has the final decision concerning all research grant proposals presented by the SC after joint discussion between the president of the SC and the president of the board.

    Article 5.4.5. Revision of the rules of the SC :

    Proposals for revisions to the procedures of the SC are made by the members of the SC and/ or the members of the board of AE. They are approved by the GA. 1 vote in favour, and 8 votes against. The proposal was rejected.

  15. Proposal to agenda for the GA 2016 from the board of directors. Revision of statutes article 5.4. The text in article 5.4 is to be replaced by the following text:
    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 themselves part of (care regarding conflict of interest must be exercised in this case),
    • to be highly involved in the organisation of European conferences on Aniridia.

    Vote for the original proposal of the board : 8 in favour, 1 against. The proposal was approved.

  16. Proposal to agenda for the GA 2016 from Association GENIRIS. Revision of statutes article 5.6. The original text “The Nominating Committee shall consist of at least three and at the most five persons” is to be replaced by the following text: “The Nominating Committee shall consist of at least three persons”. 1 vote in favour, and 8 votes against. The proposal was rejected
  17. Proposal to agenda for the GA 2016 from Association GENIRIS. Addition to the statutes of the following article: “Article 5.8 – research and development Committee.
    The purpose of the research and development Committee is to make recommendations to the General Assembly regarding the election of one or several persons as member of the SC after joint discussion with the board of AE.The research and Development Committee shall consist of at least three persons. One of these persons is assigned as Chair of the research and development Committee and is responsible for summoning the rest of the Committee and leading the work of the Committee. Eligible as members of the research and development Committee are honorary members and any representative from a full member association”. 1 vote in favour, and 8 votes against. The proposal was rejected.
  18. Decision about granted discharge for the Board of Directors : The general Assembly granted discharge for the Board of Directors.
  19. Decision about the membership fees for 2017-2018. The General Assembly decided to keep the same level for membership fees, that is, 30 euros or more per year for full members, voluntary fee for affiliated members
  20. Discussion on Activities and proposal on Budget for 2017-2018: Many issues raised at the discussion that should be addressed by the new board. Proposal to improve the website, by creating a working group to renew and update it, improving layout, accessibility and content. Fundraising and the Scientific Committee were also indicated as key issues.
  21. Decision on the number of members of the Board of Directors : The Nominating Committee suggested to keep the Board of Directors up to 9 members. All were in favour, and the proposal was adopted.
  22. Election of the president of the federation
    Rosa Sánchez the Vega was elected president.
  23. Election of the vice-president of the federation
    Barbara Poli was elected vice-president of the federation.
  24. Election of the treasurer of the federation
    Denice Toews-Hennig was elected treasurer of the federation.
  25. Election of the secretary of the federation
    Galina Gening was elected secretary of the federation.
  26. Election of possible other members of the Board of Directors
    Katie Atkinson, Ivana Kildsgaard, Anita de La Fuente, Ognian Petkov, Marjorie Poeydomenge were elected members of the Board of Directors
  27. Election of the Scientific Committee : Recommendations from the Nominating Committee: To keep it as it is now: Juan Pedro Alvarez de Toledo (Spain), Dominique Brémond-Gignac (France), Barbara Käsmann-Kellner (Germany), Paolo Rama (Italy) and Tor Paaske Utheim (Norway). As it was not possible to confirm Julie Daniels´ availability before the GA, it was agreed to confirm her as a member of SC if she is available.
    The General Assembly voted in favour of confirming the current SC members. When the modifications to the statutes are enforced, new members of the SC will be designated according to the new procedures.
  28. Election of a Nominating Committee : Asbjørn Akerlie, Gaelle Jouanjan and Corrado Teofili were elected in the Nominating Committee. Asbjørn Akerlie was elected chairperson.
  29. Election of an Auditor: Arvid Meløy was elected. No other proposals.
  30. Election of possible other Trustees : No proposals. No other trustee was elected.
  31. Miscellaneous: Proposal to collaborate with Kelly Trout and the US WAGR association.
  32. Closing of the meeting : The meeting was closed at 19.30 hrs.
    Anita de La Fuente

Secretary of the meeting