The Scleroderma Society in Europe
The Scleroderma Society is a founding member of FESCA (Federation of European Scleroderma Associations), working to forward the cause of people with scleroderma throughout Europe. FESCA is a umbrella organisation for scleroderma patient support groups across Europe. FESCA is a non-profit association and all its work is done on a voluntary basis by members of the individual national associations. FESCA established European Scleroderma Awareness Day in 2009 and by 2010 it had become a world-wide event, now known as World Scleroderma Day. FESCA organises a world patient congress for people with scleroderma (systemic sclerosis, not localised scleroderma) the first of which took place in Florence in 2010 and the second in Madrid in February 2012. The patient congresses run concurrently with the scientifical and medical counterparts.
The FESCA website has links to all its member associations across Europe as well as information about FESCA's aims and vision, and future events.
FESCA has a popular Facebook page which is flourishing with information and links about scleroderma from both within Europe and worldwide.
It‟s a lively, animated place to share information with others, chat and find links to other scleroderma associations on Facebook. It’s carefully moderated and run for FESCA by a member of the Danish Scleroderma and Raynaud’s Association.
FESCA's aims and vision
“A world in which everyone with Scleroderma receives appropriate access to the same level of successful care from fully informed healthcare professionals.”
Our vision is one of a world in which:
- scleroderma is recognised as an important disease
- society knows about scleroderma, and those with the disease do not feel so isolated
- people with scleroderma have equal access to successful treatments
- medical practitioners have better knowledge and access to treatments
- consistent care for people with scleroderma is provided across Europe and the globe
The FESCA mission statement:
“To make scleroderma a well-known disease and, in collaboration with doctors, to secure for those with scleroderma the best possible treatments, care, and ultimately a cure.”
Our mission will be achieved by:
- working with doctors to secure top treatments, care, and ultimately a cure
- facilitating collaboration among national associations to share ideas and projects
- becoming the main representative of the national scleroderma organizations in Europe
- working with and encouraging the active involvement of politicians and pharmaceutical companies
Ultimately we will:
“Educate the world, patients, and doctors about Scleroderma”
FESCA acts at a pan-European level to promote and achieve its objectives in alignment with the aims of the national groups it represents. As an umbrella group, FESCA supports its member organizations, while the support of individual sufferers of scleroderma remains the sole remit of national organizations.
FESCA's objectives include encouraging the active involvement of politicians and pharmaceutical companies, working with doctors to secure earlier diagnosis and better treatments, and creating greater awareness of scleroderma so that those who suffer from it can access proper, equitable care. To do this, FESCA facilitates collaboration among national associations to share ideas and projects, and works towards the evolution of a political, social, and medical environment that facilitates the achievement of the FESCA vision.