Aniridia Network UK is founding member of new Aniridia Europe organisation

Aniridia Network UK are very pleased to announce the creation of Aniridia Europe, a federation of aniridia patient associations, support groups and individuals from across Europe.

We have been collaborating with colleagues from across Europe for the past few years. With a lot of hard work from everyone involved, particularly Rosa from Spain and Neven from Sweden we now have an official organisation which covers the whole of Europe.

The aim of Aniridia Europe is to allow patients and doctors from across Europe to share their knowledge and experiences and to help new aniridia patient groups grow in countries which don’t currently have a support network.

Aniridia Network UK are very proud to be a part of Aniridia Europe. We have joined as a full member and will contribute to the growth and development of the organization. Katie Atkinson,  Chairperson of Aniridia Network UK has been elected to the Board of Directors of Aniridia Europe. We hope our members will see the benefits of being part of a European wide initiative.

We are already very excited about the forthcoming medical conference of aniridia being organized by Aniridia Norway which will take place in Oslo in June 2012. This will bring together researchers from across Europe interested in all aspects of aniridia allowing greater collaboration, reduce duplication of work and speed up the pace of research – benefiting everyone.

Aniridia Europe

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. More information is available on www.aniridia.eu.

“With the development of this Federation, we are removing barriers both physical and of knowledge, we are expanding our the scope of our activities, 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 is a rare congenital eye disease, which implies lack of an iris. Several associated conditions, such as for example cataracts, glaucoma and cornea clouding, often cause severe low vision among those who are affected. Other organs of the body are also sporadically affected, as in WAGR syndrome where Aniridia appears together with Wilms tumour, Genitourinary problems and mental Retardation.

This European Federation helps to pool knowledge, to exchange experiences on this condition and to provide support both among doctors and patients, by trying to reduce the duplication of efforts and unnecessary tests, to accelerate processes, based on evidence, and to optimize resources, in short, to improve care and daily life for people living with aniridia.

“Aniridia Europe was founded by representatives of sixteen European countries including eight national aniridia associations from Norway, Sweden, France, United Kingdom, Italy, Spain, Germany and Finland. In addition we have aniridia networks and contact persons in several other European countries and in the future we envisage aniridia associations throughout the whole of 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

Advertisements

About Aniridia Network UK

A charity support group for people with the genetic visual impairment aniridia and their families in the UK. Our vision is that people with/associated with aniridia are hopeful, confident, supported and well informed regarding aniridia. Founded in 2000. Registered as a charity in 2011 with HMRC reference XT26830
This entry was posted in ANUK news. Bookmark the permalink.

One Response to Aniridia Network UK is founding member of new Aniridia Europe organisation

  1. Pingback: Aniridia Europe board meeting and networking event | Aniridia Network UK

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s