Aniridia Europe at EPOS 2017

Katherine Atkinson and James Buller represented Aniridia Europe on a stall shared with Antoine Gliksohn and Mark Sanderson from Albinism Europe at the European Paediatric Ophthalmological Society meeting.

Katie Atkinson and James Buller, from Aniridia Network UK, represented Aniridia Europe as well as their own organization at the 43rd Annual Meeting of the European Paediatric Ophthalmological Society (EPOS) in Oxford (UK), from 31st August to 2nd September 2017.

Aniridia Europe shared an information booth with Albinism Europe, represented by Antoine Gliksohn, and was also joined by Mark Sanderson form the Albinism Fellowship (UK albinism association). Our representatives distributed Aniridia Europe brochures and flyers and had the opportunity to meet many doctors, especially from smaller countries where there is not already an aniridia association.

Although there were not any talks directly relevant to aniridia, we met professionals taking care of children with low vision, among them children with aniridia, and we could learn about a new genetic test called NGS (Next Generation Sequencing) on genes which can be connected to nystagmus, including the PAX6 gene.

The meeting was also a way to be in contact with doctors belonging to the RED ERN (Rare Eye Diseases European Reference Network).

Call to action from President of Aniridia Europe

Dear friends

I want to remind and reinforce the invitation to join the celebration of Aniridia Day, next June 21th.

We encourage you and your association to organise different events to celebrate Aniridia Day. June 21st 2017 will be Wednesday. Maybe some events have to be organised the weekend before or after, to be successful. This is ok, too.

The Aniridia Day Organising Committee held a poetry competition and propose Shining Success campaign, but you can organise different events, like:

  • a sport competition or match,
  • a dressing-up contest,
  • dissemination of information
  • organising a conference in a hospital/eye clinic,
  • a theatre play,
  • participation in media (radio or tv),
  • dissemination of a professional involved in aniridia or a press release,
  • a fashion show,
  • a charity sale, etc.

All ideas/actions are welcome as long as they show a real but positive picture of the aniridia community.

We would very much appreciate if you could share these experiences and events in this mailing list community@aniridia.eu and send any questions and a report to contact@aniridiaday.org . It is very important to have a record of all the activities developed around this OUR DAY.

You can also take a picture with sunglasses of yourself together with your family or friends (also with sunglasses to empathise) and share them on social media on Aniridia Day and ask people to share it, too.

We are creating a wave that will reach every continent.
We are raising awareness about our disorder.
Aniridia will not be an unknown disease from this date on.
Everyone can contribute one way or the other.
JOIN US IN THIS EXCITING ACTION

I wish you a huge success on this day. Your success will be whole aniridia community´s success..

Warm regards.
Rosa Sánchez de Vega
President of Aniridia Europe

Letter from the President

Dear friends:

I would like to express my gratitude for your support and let you know that I, together with the board, am facing this new term, as President of Aniridia Europe, with enthusiasm and energy. We have a promising time ahead. In my previous mandate as president, our main goal was to start the organisation, but now that National Aniridia Associations have become more mature and stronger, we can really make the difference. I have to thank former president, Asbjorn Akerlie, for all his work, together with the board, to support the European Aniridia Conference in Duisburg (Germany), to empower support groups and individuals with aniridia, to collaborate with other European Organisations and to promote research.

Goals are only achieved with clear objectives, clear roadmap and with a  determined and hard-working leading group and we have all this, we have an excellent dedicated board, that is doing its best to improve the situation of people with aniridia. And we also have an excellent and expert Scientific Committee.

We will have many opportunities in the future to raise awareness on our disease, like the celebration of Rare Disease Day (last day of February) and Aniridia Day, June 21st, which will give us the opportunity to raise our voice and have our concerns and challenges visible. We are developing a Scientific Network, that together with our Scientific Committee, will try to develop or/and participate in aniridia research projects and conferences. Thanks to the past European Aniridia Conferences and the work of National Aniridia Associations for many years, now we have professionals interested in our rare disorder and willing to develop research projects. A  new exciting European Aniridia Conference in planned for Paris in 2018 by the French Aniridia Association, Geniris, that will mean a step forward in better care and research on Aniridia.  To organise these key events, we need funds, we need personal and financial support.

We would like to turn the organisation into a strong, active and inclusive one, but this cannot be done without you.  This is why, we invite you to participate in the different National and European activities and in the different working groups. You can contribute, according to your education, hobbies and skills. The more we are, the stronger we will be and the further we will reach. We need volunteers, we need hands to make this come true.

Our mission is to advocate for better care and better quality of life for people living with aniridia in Europe, to reduce inequalities among countries in the access to health and social services  for these patients. And, to reach this goal, we have to build a strong community, we need all of you!

Please, join us as a volunteer or a sponsor.

Looking forward to meeting you in one of our events.

Rosa Sánchez de Vega

Minutes from the General Assembly, August 26th, 2016

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

Agenda and documents for General Assembly, August 26th, 2016

This is the final agenda for the General Assembly, August 26th, 2016 in Duisburg, Germany.

Documents:

  1. Board comments and recommendations on AE statutes proposal for revision
  2. Financial statement
  3. AE Activity Report for 2014 -2016

As we will not hand out paper-copies of the documents at the General Assembly, we recommend that each member prints the documents or save them in an electronic device of her/his own. We also recommend that each member print or save, and read, the Statutes to be ready for GA.

Call for General Assembly

General Assembly will take place
on August 26th, 2016, 17.00 – 18.00,
Wyndham Duisburger Hof Hotel
Opernplatz 2
47051 Duisburg
Germany

https://www.wyndhamduisburg.com/en

Full members of the association are welcome to submit formal proposals to the agenda for the assembly.

Proposals will be taken into the agenda as they are formulated. In case of proposals for new articles to the statutes (or revision of articles) the articles in question have to be formulated completely in full text.

Proposals are to be sent to asbjorn.akerlie@aniridia.eu no later than Friday the 6th of August.

A New Year’s Letter from the President

Dear friends, members and partners of Aniridia Europe.

In a few days time we will pass into a new year with new opportunities and, of course, also challenges.
Since its foundation in 2011 Aniridia Europe has in a surprising short time developed into a full-blown organisation. This development, again, is the result of the hard work and enthusiasm that each of you and our funding partners have invested in our goal.
It is also important to acknowledge that the strength of Anirida Europe not only resides in what we have accomplished in the last three years but goes back to all the work that were done by several national associations in the years before Aniridia Europe came into existence.

The achievements that we have accomplished in 2014 witnesses how far we have reached. The conference on Aniridia in Venice on September was on an outstanding high scientific and organisational level. This is the result of the tremendous efforts made by the organizing and the scientific committee. We are also very thankful to the collaborating organizations: Istituto Superiore di Sanità – Centro Nazionale Malattie Rare, The Stewart Testamentary Trust and AFI Aniridia Foundation International.

2015 will be a year with many interesting opportunities for us. In a very few month, Springer international is going to publish a book whose preliminary title is: Aniridia: Recent Developments in Scientific and Clinical Research.

But we do have some challenges ahead of us. We still have to work continuously to secure funding for our activities, empower national associations and create a sustainable platform for scientific conferences.

Our long-term goal lies firm for our course in 2015: to create a sustainable platform for cooperation and exchange of knowledge on Aniridia between doctors and scientists, the national associations as well as individuals that are related to Anirida. In short: to do our best in order to give people with Aniridia the best possible opportunities.

I wish you all a Merry Christmas and a Happy New Year.

Asbjørn Akerlie
President
Aniridia Europe

Minutes from the General Assembly, September 21st, 2014

General Assembly,

September 21st, 2014, 09.00 – 12.00 CET,

Venice, Italy

MINUTES

 

 

  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

Invitation to the 2nd European Conference on Aniridia & General Assembly, 2014

Aniridia Europe, Aniridia Italiana and Fondazione Banca degli Occhi del Veneto are pleased to announce the upcoming 2nd European Conference on Aniridia, which will be held on 19th-20th September 2014 in Venice (Italy).
Information about the conference, programme, faculty list and venue is available on www.aniridiaconference.org.

During the same weekend, Aniridia Europe is planning to hold some institutional and social activities for members and participants in the framework of an international gathering of the aniridia community.

The Board of Directors’ meeting is scheduled on Thursday 18th September 2014 afternoon, while Aniridia Europe’s General Assembly will be held on Sunday 21st September 2014 morning.
Please take note of this schedule while booking your travel and accommodation.
Further information will be provided as soon as it is available.