Federation of European Scleroderma Associations aisbl
Budget
€260,000
EP Access
0
accredited persons
Staff
4
2 FTE
EU Grants
None
Mission & Goals
The Federation of European Scleroderma Associations (FESCA) aisbl was founded in 2007 and is registered as a charity in Belgium, with a Board drawn from five different EU countries. It is an umbrella group of 27 national scleroderma patient support-and-advocacy organisations in 21 European countries. Our mission is to provide information to people with scleroderma, increase awareness on an international level, and advocate for equitable treatments for people with scleroderma throughout Europe.
EU Legislative Interests
Disability strategy, European Health Data Space, Horizon Europe, European Pillar of Social Rights
Communication Activities
FESCA aisbl acts as a central force funding the national campaigns for what is now World Scleroderma Day on June 29 supporting 21 nations and increasing awareness exponentially. Every year, on June 29, FESCA campaigns for a world in which equal rights, treatments, and care are offered to people with scleroderma, and in which such rare diseases are not forgotten, but afforded the consideration and attention of other more common diseases. In 2023, FESCA organized the 'Find the Light to Bloom’ campaign, illuminating the unmet needs of people living with the disease and the challenges they face regarding diagnosis, treatment and patient quality of life. - https://fesca-scleroderma.eu/wsd2023/ In 2022, FESCA organized its first European Parliament roundtable on "Advancing equitable rare disease diagnosis and care: How EU health policy can solve existing challenges - Stakeholders’ reflections on systemic sclerosis" under the patronage of the European Parliament and the Czech Presidency of the Council of the EU and hosted by MEP Patrizia Toia (S&D, IT) - https://fesca-scleroderma.eu/european-parliament-event-2022/ In 2023, as part of the “Find the Light to Bloom” campaign, FESCA run a patient survey to look into challenges faced by those living with this life limiting disease, from limited access to treatment and care, which can vary across the EU, to the impact on people’s emotional and mental wellbeing, as well as their performance and independence at work. Hence, FESCA organized its European Parliament roundtable "Paving the way for rare diseases patients: Addressing unmet needs for an improved quality of life and care" hosted by MEP Patrizia Toia (S&D, IT) where it presented the results of the patient survey - https://fesca-scleroderma.eu/european-parliament-event-2023/ FESCA runs the Patient Program during the Systemic Sclerosis World Congress which takes place every second year in differing locations. The Patient Program consists of interactive sessions of lectures and discussions between doctors and medical staff and patients.
Interests Represented
Does not represent commercial interests
Member Of
European Patient’s Forum - https://www.eu-patient.eu/ EULAR - https://www.eular.org/ EURORDIS - https://www.eurordis.org/
Organisation Members
Membership available at: https://fesca-scleroderma.eu/our-members/
Commissioner Meetings
No recorded meetings with EU commissioners.