It was a pleasure to attend another GILS conference. I was there in 2005 when Carla first mentioned the possibility of all the Scleroderma organisations in Europe joining together to form an Umbrella Group. I'm very pleased to tell you that this year FESCA, the Federation of European Scleroderma Associations, was registered with the Notary in Belgium. We have 11 member countries at present and hope that more will join. Countries so far are:- Belgium, Cyprus, France, Germany, Holland, Hungary, Ireland, Italy, Portugal, Spain and the UK. We have 14 Associations as Belgium, Italy and the UK have 2 each. This means that each country has two votes.

I am very proud to have been elected the first President of FESCA together with the first Vice President, Ann Tyrell Kennedy from Ireland. The first secretary is Ana Aja Pando from Spain and the first Treasurer is Claude Ginoux from France. Carla has been working on FESCA's logo and almost all members present at our last meeting in Bad Nauheim in Germany have a job to do.

All of us are on a sharp learning curve as an umbrella group is very different from our collective expertise of running national organisations. However, we have a large remit and due to time constraints do not have the time to itemise each objective. Together we will endeavour to promote the advancement of knowledge, research and information in the field of Scleroderma within medical, governmental and social arenas and increase awareness amongst the medical profession and general public. One of our first tasks is to write to the Italian Government to inform them that Scleroderma is a rare condition and needs to be reclassified as such. It is my hope that FESCA will improve parity of care for all people with Scleroderma throughout the EU and indeed the world.

Many thanks for the kind hospitality of GILS.

Kim Fligelstone

April 2007