• Federation of European Scleroderma Associations aisbl
Acronym: FESCA
General Information
Identification Code: 071436850741-73
Website: [object Object]
Entity Form: AISBL
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 7/12/2023
EP Accredited Number: 0
Mission & Interests
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 23 national scleroderma patient support-and-advocacy organisations in 18 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.
Interests Represented: Does not represent commercial interests
Interests:
- Digital economy and society
- Employment and social affairs
- Public health
- Research and innovation
Levels of Interest:
- european
- global
Activities
Main EU Legislative Proposals: 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, FESCA will organize another European Parliament roundtable to present the results of the patient survey.
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.
Inter-institutional or Unofficial Groupings: N/A
Head Office
Address: Rue du Pont à Rieu 13 i
Post Code: 7500
City: Saint Maur
Country: BELGIUM
Phone: [object Object]
EU Office
Address: Rue du Pont à Rieu 13 i
Post Code: 7500
City: Saint Maur
Country: BELGIUM
Phone: [object Object]
Financial Data
New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Membership Information
Members10 Percent: 0
Members25 Percent: 2
Members50 Percent: 0
Members75 Percent: 4
Members: 6
Members F T E: 3.5
Structure
Structure Type: Structure
Is Member Of: Membership available at: https://fesca-scleroderma.eu/our-members/
Organisation Members: European Patient’s Forum
European League Against Rheumatism