General Assembly,

September 21st, 2014, 09.00 – 12.00 CET,

Venice, Italy




  1. Opening of the meeting
    The meeting was opened at 9.20.
  2. Approval of the agenda
    Agenda was approved.
  3. Election of the chairman of the meeting
    Neven Milivojevic was elected chairman of the meeting.
  4. Election of the secretary of the meeting
    Barbara Poli was elected secretary of the meeting.
  5. Election of two persons to check the minutes and to serve as teller if needed
    Ognian Petkov and Åse Hege Bratli were elected as persons to check the minutes and serve as tellers if needed.
  6. Establishment of electoral register
    The electoral register was established. Full members with right to vote were: Bulgaria, France, Germany, Italy, Norway, Spain, Sweden, UK; Finland and Russia were absent.
  7. Activity Report 2012-2014
    Activity Report was illustrated by Barbara Poli; an amendement was suggested in order to include in the Nominating Committee the name of Ivana Kildsgaard, that had erroneously been omitted.
  8. Financial Report 2012-2014
    Financial Report 2012-2014 was illustrated by the Treasurer.
  9. Adoption of the Report and accounts
    Activity Report 2012-2014 was adopted with the suggested amendment, Financial Report 2012-2014 was adopted.
  10. Recommendations from the Auditor
    The Statements of Accounts for 2012 and 2013 from the Auditor were read and received by the General Assembly.
  11. Decision about granted discharge for the Board of Directors
    The General Assembly granted discharge for the Board of Directors.
  12. Decision about the membership fees for 2015-2016
    The former Board suggested to keep the same level for membership fees (30 euros or more per year for full members, voluntary fee for affiliated members); no other proposals were submitted. The General Assembly decided to keep the same level for membership fees.
  13. Discussion on Activities and proposal on Budget for 2015-2016
    Rosa Sánchez de Vega explained the objectives of the document “Discussion on activities 2014-2016”, that is, promoting a discussion within the General Assembly on the strategy lines for the next years’ activities in order to provide a base for the next Board of Directors to establish an Action Plan for the upcoming mandate period.Neven Milivojevic explained the preliminary Budget for 2015-2016, whose main feature is to keep a balance between the expected incomes and the expected expenses, while maintaining the grounds built in the previous years.Discussion within the General Assembly highlighted that all members consider a key strategy line the enlargement of the federation. Many countries offered to promote the creation of new associations in their respective neighbour countries: Bulgaria (Greece, Serbia, Macedonia, Romania); Norway (Denmark: a meeting is already planned in October 2014); Spain (Portugal); UK (Ireland); France (Belgium, Switzerland, Luxembourg; contacts are already active with North African countries such as Algeria and Tunisia); Italy (Slovenia and the Italian speaking part of Switzerland). It was suggested to develop guidelines on how to establish an association, and the Bulgarian delegates pointed out that we could reuse for this purpose a chapter of the Manual developed within the Norwegian-Bulgarian project Building new mechanisms of self-help for people affected by Aniridia.As for visibility and awareness, the website was recognized as a key tool, that requires a considerable effort to be maintained and updated. The British delegate confirmed her availability to check the language of materials to be published. It was suggested to develop a newsletter directed not only to members, but also to the doctors in our network, because it is quite unlikely that they check the website looking for news.
    The proposal was accepted.Better care and research was also recognized as a key strategic line for the next years. All the issues listed in the document were considered equally important; most of them are already in some stage of development (network of doctors, guidelines, registry of patients) and will require further effort after what was discussed and agreed during the Conference in Venice.

    It was also pointed out that the next Conference should also be seen as a point of arrival for some of these issues, in other words, a moment when some results should already be achieved.

    The French delegate asked to know the costs of the previous conferences in order to verify the possibility to organize the next one in France. Norwegian and Italian delegates declared to be available to provide this information.

    Governance issues were not discussed.

    As for fundraising, the possibility of having some professional help to raise funds was discussed, pointing out that, besides the micro-fundraising that all the associations perform and that is obviously useful, a high level of fundraising is also possible, but we need to appoint the right person to it, otherwise we could jeopardize all our efforts. The issue will be among the main priorities for the next Board.
    The Preliminary Budget for 2015-2016 was adopted.

  14. Decision on the number of members of the Board of Directors
    The Nominating Committee suggested to enlarge the Board of Directors up to 9 members. The proposal was adopted.
  15. Election of the president of the federation
    Asbjørn Akerlie was elected President of the federation.
  16. Election of the vice-president of the federation
    Barbara Poli was elected vice-president of the federation.
  17. Election of the treasurer of the federation
    Denice Toews-Hennig was elected treasurer of the federation.
  18. Election of the secretary of the federation
    Ognian Petkov was elected secretary of the federation.
  19. Election of possible other members of the board of directors
    Katherine Atkinson, Galina Gening, Markku Latikka, Marjorie Poeydomenge, Rosa Sánchez de Vega were elected as Board members.
  20. Election of the Scientific Committee
    The General Assembly was informed that Dr. Tor Utheim was nominated chair of the SC with a mandate of six months. During the discussion, the importance of including new members in the SC was suggested in order to bring new energy and commitment, while it was also pointed out that it is necessary to ensure balance and effectiveness to this fundamental organ.The General Assembly then voted in favour of giving mandate to the Board to enlarge the Scientific Committee within the next two years if the conditions were favourable.The General Assembly was then asked to decide whether to confirm the current five SC members or add new members immediately. The General Assembly voted in favour of confirming the current SC members: Juan Pedro Álvarez de Toledo (Spain), Julie Daniels (UK), Barbara Käsmann-Kellner (Germany), Paolo Rama (Italy) and Tor Paaske Utheim (Norway), although expressing the wish for a thoughtful enlargement when possible.
  21. Election of a nominating committee
    Ivana Kildsgaard, Gaëlle Jouanjan and Corrado Teofili were elected in the Nominating Committee; Ivana Kildsgaard was elected as the chairperson.
  22. Election of an auditor
    Arvid Meløy was elected as auditor.
  23. Election of possible other trustees
    No other trustees were elected
  24. Miscellaneous
    No other issues were discussed.
  25. Closing of the meeting
    The meeting was closed at 1 p.m.

Barbara Poli
Secretary of the meeting