• Federation of European Scleroderma Associations aisbl

Acronym: FESCA

General Information

Identification Code: 071436850741-73

Website: https://fesca-scleroderma.eu/

Entity Form: AISBL

Registration Category: Non-governmental organisations, platforms and networks and similar

Registration Date: 7/12/2023

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:

Indic Phone: 32

Phone Number: 496265172

EU Office

Address: Rue du Pont à Rieu 13 i

Post Code: 7500

City: Saint Maur

Country: BELGIUM

Phone:

Indic Phone: 32

Phone Number: 496265172

Financial Data

Closed Year:

Start Date:

End Date:

Funding Sources:

Donations
Member's contributions
Other

Other Source Info: Sponsorship from pharmaceutical companies Please, note that the donations (120 euros) and the memberships (2655 euros) have not been included below.

Contributions:

Amount: 0
Currency: €
_id:
Buffer:
0: 104
1: 64
2: 60
3: 194
4: 158
5: 212
6: 182
7: 32
8: 86
9: 89
10: 242
11: 155
Amount: 0
Currency: €
_id:
Buffer:
0: 104
1: 64
2: 60
3: 194
4: 158
5: 212
6: 182
7: 32
8: 86
9: 89
10: 242
11: 156
Amount: 0
Currency: €
_id:
Buffer:
0: 104
1: 64
2: 60
3: 194
4: 158
5: 212
6: 182
7: 32
8: 86
9: 89
10: 242
11: 157