World Scleroderma Day 2019
PRESS RELEASE: European associations align in the battle against systemic sclerosis
What’s coming up next:
It is only three months now until the next World Scleroderma Day, organized by The Federation of European Scleroderma Associations (FESCA aisbl), and celebrated every year on June 29th. This year FESCA is ready with a lot of new ideas, presented to its representatives at the Annual General Meeting in Prague on March 29th.
“This year” explains Annelise Roennow, President of FESCA, “we decided to focus the campaign on young people, to spread awareness that this is a disease that does not only attack women in their middle years, but also young people, men and children too. If we can achieve earlier diagnosis, we can catch and treat the onset of scleroderma sooner in young people.”
The new campaign, coordinated by Italian journalist Serena Mingolla, will have a longer run-time. Long before June 29th, it starts with a social media campaign in April, and proceeds with the Europe-wide launch of a video shot in the amazing location of the University of Milan, using young volunteers and translated into many languages. Finally a series of events will take place in major European cities and throughout the world to raise awareness and spread the word.
FESCA members include 25 national organizations in 19 countries, combining their efforts to fight a progressive rare disease that still has no cure. Scleroderma, also known as Systemic Sclerosis, severely compromises quality of life, and it is the hope of FESCA that more innovative treatments will soon be found to control it.
“Together we can fight back,” says Roennow, “and our slogan A Whole World of Support shows our faith in a united effort to turn the spotlight on this life-threatening condition. We therefore ask everyone to follow our social media and share our campaign widely. Help us make it go viral!”
news & events
Annelise, a Danish scleroderma patient for many years talks about the patient’s journey towards a diagnosis.
Meet António Pereira who has lived with and fought against Scleroderma for 40 years.
Meet Tânia Vieira who talks about the biggest passion many mothers can relate to.