Aniridia in Europe – Meeting in Paris

A photo of the European aniridia representatives sitting together in a group.

A group photo of the representatives from European aniridia associations

Recently Aniridia Network UK was invited to attend a meeting in Paris of all the aniridia support groups in Europe. Eurodis (Rare Diseases Europe) had kindly agreed to help fund the meeting, providing us with 300 euros to attend so I volunteered to represent the UK.

Travelling abroad alone when you’re visually impaired can be a little daunting but armed with a magnifier (to read maps), a monocular (to read signs), a French phrase book and a few useful phrases such as “Je suis malvoyants” (“I am partially sighted”) courtesy of Google Translate I made my way to the airport.

In fact my journey went very smoothly and I arrived at the hotel just in time to join the other delegates for dinner. There were representatives there from Spain, Italy, France, Norway and Sweden. We discussed recent developments in our organisations, our personal connections to aniridia and some of our similarities and differences.

Some of us had aniridia ourselves whilst others had children with aniridia. Some of the organisations were lucky enough to receive a lot of government funding whilst others, like us, rely entirely on donations. Some organisations such as the Spanish association (founded in 1999) are quite well established whilst others are new, such as the Swedish association (officially registered this year). One thing we certainly all have in common is the desire to make the lives of people with aniridia better through information and support and encouraging more research in Europe.

At the meeting itself we discussed how we could best support new aniridia associations in other European countries. We agreed to each mentor one or two countries beginning with countries where we already have contacts, we hope that eventually everyone with aniridia in Europe will be able to access support in their own country and language.

Secondly we discussed the plans by the Norwegian association (Aniridi Norge) to organise a conference for doctors and researchers from ophthalmology, genetics and other areas of medicine associated with aniridia. The conference will take place in 2012 in Oslo and will be one of the first conferences in Europe where the central theme is aniridia. We were all very excited to hear about this and were very pleased to hear a couple of days later the Aniridi Norge had been awarded the funding they needed.

I was asked to prepare some ideas on how to improve the European Aniridia Network website. I showed the other delegates the improvements to the Aniridia Network UK website and the success of our Facebook page. We agreed to develop with more news from around Europe including the latest research. We also plan to add a small amount of information in languages other than English to help new associations find others with aniridia in their country.

Altogether it was a very productive meeting and it was great to meet the other delegates in person. We have spoken to each other before over Skype but it’s just not he same as meeting in person. We hope to continue to collaborate, sharing knowledge and esources and, funds permitting, meet again and more regularly in the future.

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