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.

New European Federation on the rare condition aniridia established

Aniridia Europe was formally established on September 25th 2011 and has its seat in Norway.
The European Federation of Aniridia Associations – Aniridia Europe – promotes research, exchange of knowledge on aniridia and empowers patients with aniridia throughout Europe. With the development of this Federation, we are removing barriers both physical and of knowledge, we are expanding our activity scope, creating links between European health professionals and patients, as well as raising awareness on our rare condition, says Rosa Sanchez Vega, the new President of Aniridia Europe.
 Aniridia Europe was founded by representatives of sixteen European countries whereof eight national aniridia associations from Norway, Sweden, France, United Kingdom, Italy, Spain, Germany and Finland. Further we have aniridia networks and contact persons in several other European countries and we vision in future aniridia associations throughout all Europe, says Neven Milivojevic Vice-President of the Federation.
 One of Aniridia Europe’s objectives is to have a scientific committee, in which different expert doctors and researchers on aniridia from each member country participate. This will facilitate the development of European research projects and European conferences on this rare condition. The First European Conference on aniridia is organized in Oslo, Norway 8-10th of June, 2012.

For more information, please contact: 
Ms. Rosa Sánchez de Vega
President
rosa.sanchez@aniridia.eu
Phone: +34 646718142

Neven Milivojevic  
Vice President
neven.milivojevic@aniridia.eu
Phone: +46 706390068

Website address change

The Aniridia Europe website has been moved from aniridiaeurope.org to aniridia.eu. aniridia.eu will be the new official domain for Aniridia Europe.

Care has been taken to prevent invalid incoming links: All links to aniridiaeurope.org will be silently forwarded to the new domain for quite some time. Still, we urge webmasters on sites that links us to update the link.

If you notice a glitch or an invalid internal link on this site, please don’t hesitate to contact webmaster@aniridia.eu and tell us about it.

AE – Aniridia Europe Meeting, April 3, 2011

EAN – European Aniridia Network Meeting
Skype, 3rd of April 2011

REPORT

On April 3rd, 2011, a European Aniridia Network Meeting was held via Skype.
Participants were from Denmark, Finland, Germany, Italy, Norway, Spain, Sweden and the United Kingdom

Minutes

It was proposed to publish on the website a short report of EAN meetings. All the group agreed.

News on the strengthening of our network
Aniridia Finland was constituted during the Stockholm Conference in March. It is now  being registered and its website is being developed.

Becoming a federation: name and logo
After preliminary work in the previous weeks, the group arrived at three options, which were discussed. Opinions were given and the group finally agreed that Aniridia Europe is the simplest and the clearest way to represent what the federation is about and where it is, so the name was adopted.
Discussion on the logo is was postponed as existing proposals need to be redesigned with the new name.

Becoming a federation: location
After preliminary work in the previous weeks, the spokespersons group came to the conclusion that the federation must be established in a country where there is already a strong association and the possibility of funding. This lead to Norway where there is also a strong commitment to cooperation.
It was asked whether the fact the Norway is not currently an EU member would pose some problems.  Checks revealed this to not be problematic.

Aniridi Norge  accepted to host the federation, under the condition that all the
representatives of different countries are involved and will cooperate in the work.
Neven Milivojevic was entrusted with the task of following the necessary procedures which would result in the  formal administrative registration of the federation in Norway.

The Aniridi Norge board will identify a contact person in Norway.

European Website
The group expressed a preference for aniridia.eu, which will be the new site domain.

Conference Oslo 2012
The Conference will be held from Friday 8th to Sunday 10th of June 2012. Sunday activities will be mainly for patients but some doctors will be there too. The group agreed that it should try to find ways to facilitate participation from Southern countries.

Report on Swedish Conference March 26th-27th
Swedish delegates reported that the conference was successful, with 45 people attending  and two doctors. A lecture about corneal diseases was held. People could also talk and exchange experiences during lunches and dinners.

Feed back on European Scientific Committee
Work is ongoing.

Adoption of the Action Plan 2011-2013
The Action Plan 2011-2013 designed by Rosa Sánchez de Vega is a very ambitious one and it could be challenging to achieve it. All the participants were fully aware of the difficulties, nonetheless all agreed that it is a good thing to cultivate higher aspirations and do one’s best to fulfill them, so the Action Plan was adopted.

AE – Aniridia Europe Meeting, February 6, 2011

EAN – European Aniridia Network Meeting
Skype, 6th of February 2011


REPORT

On Februay 6th, 2011, an European Aniridia Network Meeting was held via Skype.
Participants were from Denmark, Finland, Germany, Italy, Norway, Spain, Sweden and the United Kingdom

After a short presentation of participants, especially the newly entered in the network, the agenda was approved and discussion started.

Report on the web project

People in charge of the web project presented the draft version of the new website, to be found at www.aniridia.eu; it had been developed using WordPress, a free software system that allows for more than one person to add information to the website.
Nonetheless, at the moment updating of the website was restricted to the administrators, in order to ensure consistency.
It was decided that a message would be sent to the network members with more detailed information about how everyone could contribute.

Reports on the project “Strengthening national organizations in Europe”
During the previous meeting in Paris all the participants were tasked to mentor another country to start working together. Now they briefly reported on their work.
Persons were successfully contacted in Germany, Finland, Serbia, Croatia, Greece.
Attempts are ongoing to contact persons in Portugal, Ireland, Belgium and The Netherlands.
The group considered positively that in a short time contacts had been enlarged and pointed out that this is a never stopping project that would continue in the next months and years.
The group agreed on preparing a general text about aniridia and translating it in many languages, especially those of countries where there isn’t an association; the text, together with the reference persons in the different countries, will be put on the website to give first basic information on the disease and to establish contacts between persons.

Status of the Conference 2012 in Oslo
Norwegian delegates reported that the main funds had been secured and that two workgroups had been established, one is working on the organization and one is a scientific group for doctors. A first announcement for the conference will be soon finalized.

Report on the conference in Stockholm, Mars 2011
Swedish delegates reported that the conference in Stockholm, March 26th-27th, would be the largest aniridia meeting in Sweden ever and would include a medical lecture.
The conference is open to the Nordic countries (Norway, Sweden, Finland and Denmark).

The proposal from AFI – Aniridia Foundation International
The proposal from AFI was read and analyzed. Opinions were put forward and all agreed that collaboration between AFI and EAN is very important.

Nonetheless, at the moment it would be difficult for EAN to formalize an international cooperation as it is not a formalized organization yet.
Moreover, it has to be cleared how EAN can actually cooperate as European countries have different national laws and different national health systems.
EAN Spokesperson will summarize the question and contact AFI.

Proposal from The Norwegian Aniridia Organization: Next step towards creating the
European Network of Aniridia Associations (ENAA)

The proposal was accepted in its main lines. The group agreed that Rosa Sánchez de Vega – who has the greater experience at an international level for her position in Eurordis – should be the Spokesperson and she accepted. Neven Milivojevic (Sweden), Katie Atkinson (United Kingdom) and Barbara Poli (Italy) were nominated as Vice-Spokespersons.
It was decided a period of approximately six months to formally establish the network of Aniridia associations at European level.