AE – Aniridia Europe Constituting Meeting, 25th of September 2011


REPORT
 

Opening of the meeting

The meeting was opened at 20.00 CET by Rosa Sánchez de Vega. She gave a brief background on the development of the European Aniridia network which led to this constituting meeting. Rosa expressed her regret that due to some administrative problems, at the time of the meeting Finland and France could not participate as full members.

Approval of the agenda

The agenda was approved.

Election of the chairperson of the meeting

Rosa Sánchez de Vega was chosen to be chairperson of the meeting.

Election of the secretary of the meeting

Barbara Poli was chosen to be secretary of the meeting.

Election of a person to check the minutes and to serve as teller

Ivana Kildsgaard was chosen to check the minutes and to serve as teller.

Establishment of electoral register

Italy (represented by Barbara Poli), Norway (represented by Asbjørn Akerlie), Spain (represented by Rosa Sánchez de Vega ), Sweden (represented by Ivana Kildsgaard) and United Kingdom (represented by Katie Atkinson ) are verified to be full members. Belgium, Bulgaria, Croatia, Denmark, Finland, France, Germany, Greece, Poland, Portugal, Serbia are verified to be affiliated members without the right to vote.

Decision to establish the federation

Participants decided to unanimously establish the federation. 

Decision on the name and location of the federation

It was decided that the federation shall bear the name “Aniridia Europe” and that its seat shall be in Norway. The exact host city has not yet been determined.

Decision to approve and adopt the statutes

It was decided to approve and adopt ”Aniridia Europe statutes” as the statutes of the federation.

Decision on the number of members of the Board of Directors

The decision was reached that the Board of Directors shall be composed of a minimum of 4 (four) members and a maximum of 9 (nine) members. The variable number was decided due the low number of full members of Aniridia Europe federation at the moment and the need to allow for an increase in board members as the number of full members of the federation grows.

Election of the President of the federation

Rosa Sánchez de Vega was elected as the President of the federation.

Election of the Vice-President of the federation

Neven Milivojevic was elected as vice-president of the federation.

Election of the Treasurer of the federation

Sølvi Ørstenvik was elected as the treasurer of the federation.

Election of the Secretary of the federation

Barbara Poli was elected as the secretary of the federation.

Election of possible other members of the Board of Directors

Katie Atkinson was elected as member of the Board of Directors.

Election of a Nominating committee

Hilde Hansen, Ivana Kildsgaard and Corrado Teofili  were elected as a nominating committee, whereof Hilde Hansen was chosen as chair of the nominating committee.

Election of an Auditor

Arvid Meløy was elected as auditor.

Election of possible other trustees

No other trustees were elected.

Decision on membership fees

Participants decided to set the annual membership fee at 30 (thirty) € for full members, 0 (zero) € for affiliated members and 0 (zero) € for honorary members, starting from the year 2012.

Miscellaneous

No miscellaneous questions were discussed.

Closing of the meeting

Rosa Sánchez de Vega invited all the members of Aniridia Europe to participate at the meeting that will be held in Paris, on 19th and 20th November, 2011.

The meeting was closed at 21.20 CET.

AE – Aniridia Europe Meeting, 12th June 2011

REPORT

On June 12th, 2011,a European Aniridia Network meeting was held via Skype.

Participating were delegates from Croatia, Finland, Germany, Italy, Norway, Spain, Sweden and the United Kingdom

Constitution of the federation

The delegates adopted the Final Proposition of new Statutes for Aniridia Europe. It was decided that it would be formally adopted at a Constitutional General Assembly called on Sunday, September 25th, 2011, via Skype and would then become the federation’s Statute.
It was decided that the national Boards of existing Aniridia Associations would be called to sign the Constitutional Paper on Establishment of Aniridia Europe no later than September 25th and that these Boards would also have to appoint a Representative and a deputy Representative for the Constitutional General Assembly.

It was recommended that the Constitutional General Assembly elect a Board of Directors of the federation as well as other necessary trustees. The Board of Directors will be responsible for preparing the next steps of the development of the federation. The election of the Scientific committee has been postponed to the next ordinary General Assembly.
Aniridia Norge was appointed as Temporary Nominating Coordinator whose task will be to gather from EAN members the nominations of candidates for the federation and to present them at the Constitutional General Assembly. 

Candidates must have accepted the nomination before being nominated.

It was decided to call for an ordinary General Assembly in Oslo, Norway at the beginning of June 2012.

Web page and logo

Scientific articles and abstracts are ready and will be soon published on the website. Work on translations is ongoing: Croatian and Danish texts are ready for publication and draft versions of Polish and Dutch texts will soon be revised.

There is a proposal for a logo, but more preliminary work is needed.

Last news about Conference in Oslo 2012

The Conference agreed on the estimated schedule and all the speakers agreed to come. The scientific section of the Conference website is almost ready while information for users and patients will take more time.

 Conference in Germany

A conference of the German support group will be held on the18th of June in Michelau, Bavaria. A local scientist will give a lecture on Aniridia.

AE participation in the AFI Aniridia Conference in the USA, July 2011

Asbjørn Akerlie and Neven Milivojevic will attend the AFI Conference in Athens, Georgia, USA. Their participation will help promote the Oslo conference and will also offer the opportunity to create personal bonds and to discuss the possibility of future cooperation between AE and AFI.

Italian Aniridia Association – 5th national congress

Padua, 25th-27th of November 2011 –

Aniridia Italiana, the Italian Aniridia Association, organized its 5th  national congress from 25th to 27th of November 2011 in Padua (Veneto Region).

More than sixty people – patients, parents and relatives – attended the congress and the agenda of the meeting was characterised by the presence of many qualified speakers and full of important issues linked to aniridia condition and its implications.

 During the first afternoon of the meeting the speakers were Dr. Maria Luisa Pinello, head of the Regional Centre of the Padua University for Children’s Low Vision, member of the working group on the Italian Aniridia Guidelines, and Dr. Guido Ponzin, Director of the  Eye-Bank Foundation of Veneto, who answered to the questions of participants. The meeting, based on physician-patient informal and direct dialogue, allowed the participants to ask questions that can hardly be addressed during the medical examinations and to explore topics of the greatest interest. The main topics were UV protective lenses, contact lenses, corneal diseases, glaucoma and cataracts in association with aniridia.

 The next morning, Vanda Brunelli, a clinical educationalist, led the group to explore the implications of personal identity development in children with visual impairment and the affective relationships and communication within their families. This session required the active participation of the whole group and entailed a great intellectual and emotional involvement. The aim was to emphasize the need for each individual to develop strategies to adapt to the disability, where adaptation is not intended as resignation or passivity, but rather as the ability to intelligently understand the real life and to deal with it appropriately.

 The afternoon of the same day the general Assembly of the Italian Aniridia Association took place. During the assembly it was announced the establishment of Aniridia Europe, the federation of European Aniridia associations, and the launch of the first European Conference on Aniridia that will be organized in Oslo in June 2012. The members were also informed about the state of the art of the Italian Guidelines on Aniridia that are progressing by the National Centre for Rare Diseases of the Istituto Superiore di Sanità (a technical body of the Italian National Health Service).

The morning of the next day the speaker invited was Giuseppe Scalise, president of Padua Section of the UICI (Italian Union for the Blind and Visually Impaired people).

Mr Scalise, with his undisputed expertise, firstly presented the issue of assistance, social integration and rights of persons with visual disabilities,  then answered to the questions of participants. Among other topics, were also presented the requirements for applying to the legal blind commission and were provided recommendations for preparing the required documentation. The open and friendly mood also made it possible to share useful information not only as a psychological encouragement but also as a clear and conscious tool to approach issues that are complex and actually distressing for those who have to deal with them.

Paris, November 19th-20th, 2011

Board and Networking meeting

REPORT

On November 19th and 20th, 2011, in Paris, the first Board and Networking Meeting was held, since the formal constitution of Aniridia Europe, the Federation of European aniridia associations.

Participants came from Spain, Norway, Sweden, United Kingdom, Italy, Germany and Bulgaria. They represented a network of people and organizations from seventeen European countries.

The President, Ms.Rosa Sánchez de Vega, opened the meeting on Saturday with the document Aniridia Europe in 2020. The medium-term objective that was stated was to ensure that within 2020 every child born with aniridia will receive proper medical and social assistance, This will require the creation of a strong network of patients across borders, working within the framework of EU rare diseases policies and protocols.

All participants focused on the following aim: promoting the creation of new associations in countries where they have not  already been established, analyzing all the different strategies and opportunities experienced by existing associations in the past and developing a handbook laying out standards of good practice.

Mr. Asbjorn Akerlie, member of the Organizing Committee, gave a report on the International Conference on Aniridia, that is to be held in Oslo from the 8th to the 10th of June 2012. The program is almost complete, with the participation of  among the world’s most important medical experts on aniridia. They will  be discussing key issues to improve  the knowledge of the disease and the treatment of patients.

On Sunday, the Board meeting discussed the issues concerning the development of the federation and adopted the logo. This session confirmed that  Aniridia Europe can rely on the work and commitment of a lot of people in different countries, who have accepted to undertake the completion of  tasks for the federation, over the next few months.

Time was also dedicated towards the creation of a Scientific Committee, which will assist the Federation in developing a platform for cooperation between the representatives of patients and researchers and clinics working on aniridia and related conditions.

A students exchange project, proposed by the Spanish association, was also approved and will be developed in the near future.

 

Paris, 21st of November 2010

 
EAN – European Aniridia Network Meeting

REPORT

On November 21st, 2010, the second European Aniridia Network Meeting was held in Paris. Participants came from France, Italy, Norway, Spain, Sweden and the United Kingdom. 

After a short update on the status of their national associations, the delegates then analysed the EU programmes on rare diseases.

The EU 2010 Call for proposals has a section on rare diseases and registers. The programme specifically supports the creation of new registers with the aim of increasing knowledge on RD and the development of  clinical research in order to achieve a sufficient sample size for epidemiological research and/or clinical research.

It was recognised, however, that there are several criteria to be met before applying for funding. Among them are: organization at European level, technical and organizational quality, and co-funding through the involvement of public and private partners.

Though all present considered such type of projects important and relevant for aniridia, the conclusion was reached that the European Aniridia Network of national associations is not yet ready to take on a project of these dimensions.

It was decided that to take on such goals EAN would need the following:

  • Human resources, that is a fully committed working group;
  • A formal organisation, probably in the form of a federation;
  • A main partner – preferably a public research institution;
  • One or more private partners working in a relevant field.

The conclusion was reached that EAN members will independently look for suitable public and private partners. The objective would be to initiate  a process that will lead towards viable partnerships and thus place our association in a strong position to apply for funding in EU programmes in the future.

Participants then focused on strengthening the network, which means reaching out to  countries where there is no existing national association and improving the interaction and communication between the associations within the network.

To achieve the enlargement of the network delegates agreed to adopt a new mentoring system whereby each established association will mentor one or two countries. The goal will be to help establish new national associations by:

  • Inviting reference persons to European meetings and conferences;
  • Fund-support for start-ups;
  • Providing information in several languages through the European website.

Delegates also agreed to enhance interaction between associations by:

  • Coordinating and formalizing on a European level;
  • Working on a definition of the aims of the network;
  • Having regular meetings, e.g. using opportunities such as European RD meetings and remote communication platforms;
  • Sharing information;
  • Supporting the development of the European website, with content in the languages of countries where there is not yet an association;
  • Participating in national meetings/conferences;
  • Developing common advocacy strategies regarding research on aniridia.

Delegates also agreed that EAN needs a name and a logo that can be used in communication and on the website.

As for the development of the existing EAN website, delegates decided to establish a working group with the task of analysing the current situation of the website, deciding how many and which domains are to be bought, finding an CMS which was accessible, cheap and not too ambitious and deciding on the framework and content. It was decided that this working group should give a report on this by the end of January 2011.

It was also decided that the website should contain:

  • information on the existing associations;
  • reference persons for countries where there isn’t an association, to give the opportunity to bring people of the same country in contact;
  • regular news updates from national associations;
  • information about medical studies and ongoing research projects;
  • reference to national and international guidelines on aniridia. where existing;
  • a guide on how to start an association.

Delegates consider social media like blogs, Facebook, Twitter etc. an interesting  way to publicise activities and bring people in contact, but pointed out that it must always be clear that this kind of information has to be distinguished from scientific, medical or official information coming from doctors, research centres or patients representatives.

Agenda of European Aniridia Specialists Meeting 2008

 

“Creation of Aniridia network of specialists strengthening of pathology expert base “

Hotel Saratoga 
Paseo de Mallorca, 6. Palma de Mallorca 
Tfno.: 0034 971 727242

 

Friday, 2 de may 

Morning : Scientific meeting – National and European professionals only –

8.30 – 9.00 h – Receipt of documentation

9.00 – 9.15 h – Opening session, welcome message and objectives of the workshop. Spanish Aniridia Association.

9.15 – 10.00 h – Spanish Protocol on the management and care of Aniridia patients. Evaluate developing a European protocol on Aniridia. 

  • Dr. Álvarez de Toledo. Opthalmology Center Barraquer. Barcelona – España 
  • Dr. Pérez Santonja. Opthalmology Institute Vissum Alicante. – España

10.00 – 11.30h – Current situation in the diagnosis and care of Aniridia patients. Studies and projects in each country.

  • Dr. Calvas : Service de génétique medicale. Hospital Purpan. Toulouse. France 
  • Dr. Grolla: School for Medicine Human Genetics. Salisbury. United Kingdom 
  • Dra. Edén: University Hospital. Lund. Sweden 
  • Dr. Dufier: Centre de Référence des maladies rares en ophtalmolgie. Paris. France 
  • Dra. Papadolus: Moorfields Eye Hospital. United Kingdon 
  • Dr. Rama: San Raffaele Hospital. Milan, Italia 
  • Dra. Tornquist: University Hospital. Lund. Sweden Dra. 
  • D’Elia: Istituto di Genetica. University hospital. Udine. Italy 
  • Dra. Vigano: San Raffaele Hospital. Milan, Italia

11.30 – 12.00h – Coffee break / Press conference. 
Spanish Aniridia Association

12.00- 12.45h – Development of a European Research Proyect on Aniridia to submit to the European Commission. Steps forward. 
Brainstorming.

12.45 – 13.30 h – Centres/Units of Reference for patients with Aniridia in each countries.

13.30 – 16.00 h – Group lunch

AFTERNON: GENERAL MEETING OF ANIRIDIA PATIENTS WITH SPECIALIST

– Open session –

16.00 – 16.15h – Round Table. Spanish Professionals
Presentation and Agreement on the “Protocol to be used with Aniridia patients“.
Dr. Alvarez de Toledo, Dr Pérez Santonja . Explanation of checks to be done the next day.

16.15 – 16.45h –Round table. European professionals
Brief explanation of the initiatives in each European country. 
One representative per country.

16.45 – 17.15 h – Q & A session

17.15 – 17.45h – Roundtable. Comprehensive Rehabilitation through daily 
activities ( AVD)
Integral rehabilitation programmes for blind or visually handicapped patients. Dña Concepción Blocona. 
ONCE Technical Rehabilitation Specialist.

“How to improve Aniridia patient´s quality of life”. 
D. Ángel Barañano Optical Opthometrist and specialist in Low 
Vision.

17.45 – 18.15h – Q & A

18.15 – 1845h – Patient associations: promoting research.
Aniridia associations in different countries.

  • Spain: 
    Rosa Sánchez de Vega 
    Yolanda Asenjo 
  • France
    Gaelle J.
    Gaelle Lancelin
    Ines de Leudeville
  • Italy 
    Barbara Poli
    Corrado Teofili
  • Norway 
    Hansen Hilde
    Arvid Melo

18.45 – 19.00h – Q & A

 

DAY`S CLOSURE / CELLO PIECE BY ALEJANDRO YÉBENES

SATURDAY, 3 May

09.00 hrs

Opthalmologic checks and simple taking by Spanish opthalmologists of the Protocol Book 
Hospital Instituto Balear Oftalmológico (IBO), C/ Camino de la Vileta, Palma de Mallorca.

Mallorca – May the 2nd 2008


Highly recognised and well known geneticists and ophthalmologists from different European countries met to unify criteria about the diagnosis and treatment on Aniridia  
 
In this meeting that took place in Mallorca, May the 2nd 2008, the Spanish” Protocol for the management of patients with Aniridia”, introduced by the Minister of Health, Bernat Soria, was presented 
 
 
Aiming at exchanging the isolated experiences in the diagnosis and treatment of patients with aniridia, the last scientific advances, findings investigations, clinical trials, the Spanish Aniridia Association brought together the best experts in this unfrequent  ocular  and  genetic  disease.  Several  initiatives  in  the  different countries,  such  as  epidemiological  studies  and  registries  in  the  Norhern countries  and  genetic  screening  in  England  and  France,  as  well  as  the experience  of  the  Centre  of  Reference  for  rare  ocular  diseases  in  France together  with  some  interesting  Italian  clinical  results..  were  put  in  common. 
Sharing  there  knowledge,  meeting  other  experts  on  aniridia  was  considered very  positive  by  all  the  participants  and  encouraged  them to develop a future common  and  consented  European  protocol  for  this  diseases  and  summit  a project to the European Commission. 
 
Because  of  the  scattered  patients  with  this  low  prevalence  diseases  and scattered  and  poor  professional  experience,  and  due  to  the  diverse  ocular alterations associated to this disease, this meeting was essential to unify criteria for the treatment of these patients, prevent repeated trials and share results so that they could learn from each other and step forward. 
 
The Spanish protocol for the management of patients with Aniridia, written by the  most  prestigious  Spanish  ophthalmologists  will  be  presented  at  the  next Congress of the Spanish Ophthalmologic Society in Sevilla, September 2008, This  will  be  the  base  to  develop  a  European  one,  once  it  is  translated  into English and assessed by the other participants in the meeting, who will to meet again in 2009. 
 
Aniridia associations form different European countries also participated in the meeting  in  Mallorca:  Italy,  Norway  and  France.  They  established  a  European network  of  patients  with  Aniridia.  All  of  them  are  fostering  research,  raising awareness on the diseases and supporting families and affected people in order to improve their quality of life. 
 
“We have many expectations on the protocol. We hope that from now, Aniridia will  go  out  of  the  darkness.  With  the  dissemination  of  this  guidelines  to  all ophthalmologists  in  Spain, every patient with Aniridia will be better diagnosed and will receive the best and last treatment, so that degeneration is prevented, visual  acuity  better  preserved,  as  well  as  unnecessary  and  wrong  surgeries avoided”,  as  Yolanda  Asenjo,  president  of  the  Spanish  Aniridia  Association stated.

Paris,14th of-October 2007


EAN – European Aniridia Network Meeting

REPORT

On October 14th 2007, the first European Aniridia Network Meeting was held in Paris,.

Participants came from France, Italy, Norway, Spain and the United Kingdom.

To begin with participants were asked to state their expectations. All present agreed the main expectation was  to create a European Alliance between the national associations. This would provide the opportunity  to support each other, exchange information and  experiences, learn from each other, foster research on aniridia and bring doctors from different countries in contact, with a hope that in the near future research projects could be developed at a European level.

Each association was then formally introduced by its representative. Everyone recognized that the main reason for creating the national association was the need for information, as information about aniridia is presently extremely limited and dispersed.

The more developed associations, such as Norway and Spain, are more advanced as they receive stable financial support from the government (Health or Social Ministry) .The other associations, due to limited funds, lack of staff and office space, have difficulties in setting themselves up. Board members have to cover expenses with their own money.

The Spanish association is organizing a conference on aniridia in Mallorca in May 2008. The objective is to make it international, ensuring the participation of doctors from different countries. This will provide an opportunity for doctors to exchange experiences and share information and data. With the Spanish protocol almost ready and the Italian workgroup on the guidelines for aniridia just getting started, the Mallorca conference could also grant the opportunity to consider the development of  a consensus on a European Protocol for Aniridia.

It was decided that every national association would prepare a list of doctors – including ophthalmologists and geneticists – to be invited to the Mallorca conference. The conference will also include a moment when the doctors could meet the representatives from the national associations to listen to the patients’ point of view.

When the issue of creating a formal European federation was discussed all the participants agreed that the network was not strong enough at present to afford all the work and administrative procedures it would require. So it was decided to keep the network informal for now.

Nonetheless the group decided:

– to investigate the requirements needed to present a research project within the Framework Programs of EU Health Authorities;

– to develop a website where the European Aniridia Network could become visible and accessible in order to convey information and news. Each national association would be required to  update information about its activities and any news on treatment or research coming from within their country. The website and its content will be in English.

“Medicallistes”, the Aniridia mailing list promoted by Eurordis, will be relaunched by the national associations, which will also launch a sub-list for the under 25’s.  

European Conference on Aniridia – June 8-10th 2012

ANIRIDIA EUROPE announces the European Conference on Aniridia, to be held in Oslo, Norway, on June 8-10th 2012.

The goal or the conference is to promote research on aniridia diagnosis and treatment.

The Norwegian Association of Aniridia – Aniridi Norge – is organising this European Conference on the rare disease, aniridia. The conference will take place in Oslo (Norway), on June 8-10th 2012.

European and American experts will meet in the capital of Norway,  to share the latest findings in aniridia diagnosis and treatment. Aniridia is a congenital rare disease, causing low vision and many associated eye conditions and sporadic disorders in other organs of the body.

Promotion of research on this pathology is one of the key goals of this conference, as well as increasing and exchanging scientific knowledge on Aniridia, fostering the development of patient registries, European guidelines of good practice   and  designation of expert hospital or clinic units for aniridia.

The first two days, June 8th and 9th are addressed to doctors and researchers. The third, June 10th, is addressed to patients and families. The program of June 10th  will consist of a summary of the preceding medical agenda, in addition to topics concerning how to live with Aniridia.  During the Conference  an Eye Clinic will be held where patients  can get a second opinion on their condition  from expert doctors.

In order to encourage the attendance of health professionals  Aniridia Norway, has raised enough funds to subsidize and facilitate the participation of health professionals, especially young doctors

To coincide with the Conference, the Europe Membership General Assembly  will take place on June the 7th, where many European Aniridia Associations and patients with families from different European countries will meet.

Parallel to the conference, there will be leisure and meeting activities for the international Aniridia community.

For further information, please, see:
www.aniridiaconference.org, for doctors
www.aniridiaconference.no, for patients

You can also contact:
Mr. Neven Milivojevic
Vice President Aniridia Europe.
E-mail: neven.milivojevic@aniridia.eu
Tel.+46706390068.