EAN – European Aniridia Network Meeting
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.