FESCA the Federation of European Scleroderma Associations IVZW
In 2005, Marco Matucci Cerinic gathered people with scleroderma and representatives from scleroderma organisations from Europe together at EULAR in Vienna. We were also joined by Nele Cayers & Peter Bakker who didn’t have SSc but another connective tissue disease SLE and Elaine Furst from the Scleroderma Foundation in the USA all asked by Marco to join us in exploring ways in enhancing the patient voice. PARE were also invited to this first meeting to explain the importance of collaboration between people living with rheumatic conditions, research and the medical profession.
PARE the patient pillar of EULAR also helped to spread the word with participants going back to there respective country’s where there was no specific scleroderma organisation.
Our next meeting was in Florence in 2006, with Belgium, Cyprus, France, Germany, Hungary, Ireland, Italy, Switzerland & UK, it was a triumph over adversity the meeting room was as cold as outside which was freezing. We met again with more participants from more country’s in 2006 during EULAR in Amsterdam where the name FESCA was chosen.
In January 2007 FESCA’s first AGM took place and the logo selected. Behind the scenes Peter, Caddy, Bea, Despo, Annie, Nele, Anna, Claude and Kim worked diligently and on the 2nd February 2007 FESCA was registered in Belgium. Later that year FESCA developed a Strategic Plan and the 1st Newsletter was published.
In 2009 the 1st European scleroderma day took place on the 29th June in memory of the artist Paul Klee.
The 1st World systemic sclerosis congress with concurrent patient congress took place in Florence in 2010. The World Congress continues every other year.
2012 complete overhaul/refurbishment of website by Annelise Rønnow
In 2013 DeSScipher, the 1st EU funded international research project with FESCA as partner managed by Beata Garay Toth
Papal Blessing to people living with scleroderma in Rome on the 5th February 2014 thanks to Annie Tyrrell Kennedy
World scleroderma day campaign at the EU Parliament in Brussels 30th June 2015.