GENERAL ASSEMBLY
July 8th, 2024, 5 p.m. CEST, Teleconference
Minutes
1. Commencement of the General Assembly
The meeting was opened at 17.00 CEST by Barbara Poli. There were the following participants:
| Name | Country |
|---|---|
| Didier Colle | Belgium |
| Ognian Petkov | Bulgaria |
| Elena Tsoneva | Bulgaria |
| Sébastien Montahuc | France |
| Marjorie Poyedomenge | France |
| Steve Dlugos | Germany |
| Denice Toews | Germany |
| Corrado Teofili | Italy |
| Barbara Poli | Italy |
| Sigita Howell | Lithuania |
| Irma Byle | Lithuania |
| Sølvi Ørstenvik | Norway |
| Tord Hakonsen | Norway |
| Sunniva Jernsetervangen Ørstenvik | Norway |
| Oana Simerea | Romania |
| Dmitriy Brunkovskiy | Russia |
| Galina Gening | Russia |
| Rosa Sánchez de Vega | Spain |
| Neven Milivojevic | Sweden |
| Ivana Kildsgaard | Sweden |
| Andrew Baghurst | United Kingdom |
| Katie Atkinson | United Kingdom |
| James Buller | United Kingdom |
| Elza Otroshenko (in absentia) | Ukraine |
2. Approval of the summoning to the General Assembly
The summoning to the General Assembly was approved.
3. Constitution of the meeting by the election of:
The summoning to the General Assembly was approved.
a) Election of the chairperson of the meeting
Sølvi Ørstenvik was elected chairperson of the meeting.
b) Election of a secretary who shall keep a record of the meeting
Elena Tsoneva was elected secretary of the meeting.
c) Election of two persons to check and sign the minutes
Ivana Kildsgaard and Sébastien Montahuc were elected to check and sign the minutes.
d) Election of two persons to serve as tellers if needed
Denice Toews and Irma Byle were elected to serve as tellers if needed.
4. Establishment of the Electoral Register
The establishment of the Electoral Register was a meticulous process. It was verified that 12 members from full-member national associations were present and represented. Each country was duly represented: Bulgaria by Ognian Petkov, France by Sébastien Montahuc, Germany by Steve Dlugos, Italy by Corrado Teofili, Lithuania by Sigita Howell, Norway by Sølvi Ørstenvik, Sweden by Neven Milivojevic, Romania by Oana Simerea, Russia by Dmitriy Brunkovskiy, Spain by Rosa Sánchez de Vega, the United Kingdom by Andrew Baghurst, and Ukraine by Elza Otroshenko (in absentia). AE President explained that the Ukrainian representative had previously sent an email to her and to AE Secretary with the expression of their voting, just in case they could not connect because of connection or electricity shortage. As Elza Otroshenko was actually absent, Barbara Poli asked the chairperson of the meeting if the Ukrainian vote could be admitted and reported by herself. As no one objected, the procedure was admitted.
Finland and Denmark’s representatives were absent. Among the affiliate members, it was verified that Didier Colle from Belgium was present.
5. Approval of the agenda
The agenda was approved.
6. Approval of the Activity Report 2022-2024, of the Financial Report 2022-2023 and presentation of the Auditor’s report and recommendations
The General Assembly adopted the Activity Report 2022-2024, the Financial Report, and the auditor’s recommendations for 2022 and 2023, which had previously been sent to all members.
7. Decision about granted discharge for the outgoing Board of Directors
The outgoing Board of Directors was discharged.
8. Proposals from the former Board of Directors
a) The Action Plan 2024-2026 proposal, which includes strategic lines of action and will serve as a road map for the next Board, was approved.
b) The proposals of the outgoing AE Board for the Awards of Honorary membership were approved.
• Dr. Prof. Barbara Kaesmann was recognised for her extraordinary contributions to European patients, her active role as a scientist, and her efforts to advance knowledge about aniridia through scientific articles and ongoing clinical work.
• Sølvi Ørstenvik and Neven Milivojevic were recognised for their exceptional dedication and outstanding contributions to the aniridia community.
9. Decision about the amount of the membership fee
James Buller proposed that the membership fee could be determined based on the number of association members, serving as an additional data source.
The final decision was to keep the current membership fee because it is affordable for the national associations.
10. Approval of the activities and budget for 2024-2026
The Action plan and budget for 2024-2026 were approved.
11. Decision about the number of members of the Board of Directors
The decision has been made to maintain the current number of members (nine) of the Board of Directors.
12. Election of the President of the Federation
Corrado Teofili explained the process and the work of the Nominating Committee.
Barbara Poli was elected president of the Federation.
13. Election of the Vice-president of the Federation
Denice Toews was elected vice-president of the Federation.
14. Election of the Treasurer of the Federation
Tord Häkonsen was elected treasurer of the Federation.
15. Election of the Secretary of the Federation
Elena Tsoneva was elected secretary of the Federation.
16. Election of possible other members of the Board of Directors
Galina Gening, Ivana Kildsgaard, Katie Atkinson, Oana Simerea, and Sébastien Montahuc were elected members of the Board of Directors.
Barbara Poli reported that “Aniridia-WAGR-Syndrome Ukraine” voted against the nomination of Galina Gening.
17. Election of the Nominating Committee
James Buller, Corrado Teofili, Asbjørn Akerlie, and Sunniva Jernsetervangen Ørstenvik were elected to the Nominating Committee. James Buller was elected as chairperson of the Nominating Committee.
18. Election of an Auditor
Arvid Meløy was elected.
19. Closing of the meeting
Barbara Poli closed the meeting at 6:10 pm CEST, wishing the newly elected Board of Directors success during their two-year term and expressing gratitude to the former Board members and to everyone involved in and contributing to the Federation’s mission.
Signed by:
Sølvi Ørstenvik, Chaiperson of the meeting
Elena Tsoneva, Secretary of the meeting
Ivana Kildsgaard and Sébastien Montahuc, elected to check and sign the minutes
8th July 2024