FEDERATION OF EUROPEAN SCLERODERMA ASSOCIATIONS (FESCA)
The Federation of European Scleroderma Associations aisbl (FESCA), is an umbrella group composed in 2012 of 23 patient support and advocacy organisations in 18 countries, and open to all national groups in Europe that support those with SSc. FESCA’s role is to help and link national SSc patient societies to provide the strength found in unity, pooling the resources to share best practices and practical strategies. This is a rare disease, and effective support requires embracing a wide consortium of patients, while increasing awareness of the disease. It is also FESCA’s role to provide access to a sufficiently large base for clinical research across a variety of countries. FESCA is pivotal in all SSc research and clinical studies ongoing not only in Europe but in the USA and Canada, where the inclusion of FESCA patient representatives improves the capacity of researchers to investigate the effects of SSc in different ethnic, gender, and genetic groups.
FESCA aisbl provides a beginning point of hope for people out searching the internet. FESCA shares reliable information, since each national organisation works closely with specialists in their country. New patients find FESCA through our website and facebook pages, asking for information and contacts. Networking among patients, doctors, and other interested parties is ultimately FESCA’s most valuable service to those who otherwise find themselves alone with the poorly understood disease of SSc. FESCA helps new associations to develop. A major goal is to increase awareness. FESCA works to improve understanding of the medical and sociological aspects of the disease and so to accelerate early diagnosis. As the interface between patient and specialist knowledge, FESCA increases communication between doctors and sufferers, fosters research, and advocates the spread of equitable treatment and standards of care. FESCA acts as a central clearing house for queries, recognising that most doctors have difficulty in diagnosing SSc, which presents a multiplicity of symptoms in variable patterns and with variable progress.
Beata Garay-Toth, Vice-President of FESCA aisbl.
Despo Charalambous-Demetriou, Treasurer.
Catherine VandenBosch, Secretary.