K. Fligelstone1
1Scleroderma, FESCA, London, United Kingdom
Scleroderma is an uncommon connective disease affecting around 1 in 10,000 of the population (in the UK) and it has a major impact on people who develop the disease. It is a multi system connective tissue disease that affects the musculoskeletal system and skin but can also involve the internal organs such as the heart, lung, kidneys and the gastrointestinal tract. It can be life threatening and has the highest mortality per case of any of the connective tissue diseases. Because of the low number of people affected by Scleroderma joining together will make us more powerful and give us a larger voice and influence on the decision makers, research centres, governments via the EU Parliament. The newly joined EU countries in Eastern Europe have just started operating charity based patient organisations. Information sharing between established organisations and newer ones will benefit all. One of the objectives of FESCA is to collect and distribute information on all aspects of Scleroderma in both medical and sociological areas of the disease. Awareness of Scleroderma is low amongst health, welfare, medical professions, governmental bodies and the general public, the Umbrella Group will be able to reach more people than on a National level Our goal is that every person affected with Scleroderma will receive parity of care throughout the Globe.
FESCA is the newly formed federation of European Scleroderma Associations, at present FESCA has representatives from 11 countries and we hope to be joined by more in the future.