Report of the FEWS meeting in Evry; 18^th October, 2003

Our 6^th meeting was held after the international conference organised by EURORDIS, in Evry, near Paris.

I think that we the FEWS, all came away from this meeting with the firm impression that in terms of practical advances, it had been even more productive than the previous ones. Discussion was informative and thorough, and several of the committee members gave presentations regarding future projects and strategies, which were significantly positive.

 First of these was given by Nita Lorimer [Sweden]. Her task was to consider the practicalities of coordinating the various scientific papers that are researched and written throughout Europe. We aim to have a ‘library’ which will have access to all our individual countries’ research programmes. This would be available to all our members, and would therefore promote a unified access to information, as well as a contact point for the scientists themselves, - should they need it.

 Secondly, Arne Fredje [Norway] gave a presentation on a certain EU fund  called Youth for Europe that is currently available to charities such as ours, wherein significant sums of money can be allocated to charities that are proposing specific projects. There are various types of venture that will be granted sponsorship within this scheme, as long as they comply with the following general criteria:

· Promoting cultural awareness and developing a sense of brotherhood within the European community.

· Providing opportunities for learning and vocational training.

· Developing confidence and initiative.

· Encouraging local youth work.

· Assisting integration into society

 This fund could be extremely useful to us all, as the criteria above are exactly in-line with our own FEWS objectives. And if we are successful in gaining this financial support then it could be the first step towards realizing one of our goals – which is the provision of summer activity camps for our members.

If each of our member countries were to apply for sponsorship in rotation, then the whole community could benefit from the Youth for Europe project year after year. A very exciting prospect……

 Thirdly, Horst Romm [Germany] gave a presentation about giving presentations on Power Point in order to disseminate information about the FEWS community and to  apply for donations etc.

He also volunteered to set up a web-site for the committee members to use as a forum for discussion. This will be particularly useful given the difficulties in communication that are due to the geographical distances between us all.

 Naturally there were many other administrative things to discuss at our meeting too, but the two final points to report here are that [1] we all voted to join EURORDIS which is the well-established, European Organisation for Rare Diseases. We all felt that the FEWS will be stronger for the benefit of the experience and political influence of this major charity. [2] We are all thrilled to know that Slovakia has voted to join the FEWS officially! We welcome Katarina to our committee.

 We are growing in every way.

 The next FEWS meeting will be after the Williams Syndrome Foundation [UK] Silver Jubilee conference in Preston, on Sunday 4^th July, 2004.

 Best wishes,

Suzy Cooper Morgan, Chairperson 

See the Minutes of this meeting.