COMITE INTERNATIONAL DES ORGANISATIONS DE PATIENTS ATTEINTS DE VITILIGO - VITILIGO INTERNATIONAL PATIENT ORGANIZATIONS COMMITTEE

Acronym: VIPOC

General Information

Identification Code: 823293449965-63

Website: www.vipoc.org

Entity Form: association française déclarée loi 1er juillet 1901

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

Registration Date: 4/26/2023

Last Update: 4/7/2024

Mission & Interests

Goals: Vitiligo International Patient Organisations Committee is the worldwide alliance of vitiligo patient organizations build in 2018 during the first Vitiligo International Patient Organizations Conference and is now an official NGO based in Paris. Our purpose is to raise awarness and to advocacte for vitiligo patient and families, to improve the daily life of vitiligo patients, provide them with the support and information they need, promote understanding, recognition, work on cures and care for vitiligo by the medical community and scientific societies. VIPOC, the community and support organization for vitiligo patients’ groups, was created in after multiple patient organizations had discussed the idea of banding together to improve the awareness and the lives of people with vitiligo. 3 international VIPOC conferences with more than 40 nations are sharing views, expertise, projects, etc. with vitiligo patient leaders, researchers, dermatologists, pharma industries representatives.

Interests Represented: Does not represent commercial interests

Interests:

Public health
Research and innovation

Levels of Interest:

european
global
national

Activities

Main EU Legislative Proposals: Vitiligo International Patient Organisations Committee purpose is to improve the daily life of vitiligo patients, provide them with the support and information they need, promote understanding, recognition, work on cures and care for vitiligo by the medical community and society. From this perspective, we seek to influence policymaking on issues that have a direct impact on vitiligo patients’ lives, such as research and innovation, cure and care process, psychological support and any initiative and policy related to vitiligo, dermatology or autoimmune diseases. - Regulation for involvement of patient organisations in clinical trials from the start, in scientific studies related to patient (trials, disease impacts, burden, etc.) as patient representatives in the scientific committees. - Patient organisation funding by EU and by states government to reinforce patient independency. - Reform of the EU pharmaceutical legislation. - Clinical Trials Regulation. - Regulation No 726/2004 laying down Union procedures for the authorisation and supervision of medicinal products for human use and establishing a European Medicines Agency. - Directive 2001/83/EC on the Community code relating to medicinal products for human use. - Horizon Europe.

Communication Activities: VIPOC and in-countries patient organizations raised awarness and advocacy on global and in countries levels up to now No communication activites at European level so far. VIPOC EU patient organizations members want to have specific action plan in European Union community.

Inter-institutional or Unofficial Groupings: N/A

Head Office

Address: 10 rue Lacuée75012 Paris

Post Code: 75012

City: PARIS

Country: FRANCE

Phone:

Indic Phone: 33

Phone Number: 608060649

EU Office

Address: 10 rue Lacuée75012 Paris

Post Code: 75012

City: PARIS

Country: FRANCE

Phone:

Indic Phone: 33

Phone Number: 608060649

Financial Data

Closed Year:

Start Date:

End Date:

Funding Sources:

Donations
Other

Other Source Info: VIPOC funding is done through donations and fundings from pharma industries which are working in auto-immune diseases like vitiligo. Up to now, vitiligo was rarely recognized as a serious disease and wasn't involved in public funding radars. VIPOC doesn't recieved public funding since creation. The funding purpose is to ensure capacity to patient advocacy and awarness in the different countries.

Contributions:

Amount: 0
Currency: €
_id:
Buffer:
0: 104
1: 64
2: 60
3: 162
4: 158
5: 212
6: 182
7: 32
8: 86
9: 89
10: 225
11: 231
Amount: 0
Currency: €
_id:
Buffer:
0: 104
1: 64
2: 60
3: 162
4: 158
5: 212
6: 182
7: 32
8: 86
9: 89
10: 225
11: 232
Amount: 0
Currency: €
_id:
Buffer:
0: 104
1: 64
2: 60
3: 162
4: 158
5: 212
6: 182
7: 32
8: 86
9: 89
10: 225
11: 233

Total Budget: 76050

Grants:

Current Year:

Grants:

Complementary Information: VIPOC EU starts its advocacy and awarness activities in 2023 Before 2023 VIPOC did act on local in-countries and global areas

Membership Information

Members10 Percent: 3

Members: 3

Members F T E: 0.30000001192092896

Info Members: VIPOC and in-countries patient organizations raised awareness and advocacy on global and in countries levels up to now No communication activities at European level so far. VIPOC EU patient organizations members want to have specific action plan in European Union community. VIPOC EU is led by patient representatives, all are volunteers. Gaone Matewa (South Africa) President of Beyond Vitiligo Jean-Marie Meurant (France) Vice-president of French Vitiligo Association www.afvitiligo.com Georg Pliszewski (Germany) President of Vitiligo Bund de www.vitiligo-bund.de Paul Monteiro (The Netherlands) President of Vitiligo.nl www.vitiligo.nl Nicolle Maquignon (France) Vice secretary of French Vitiligo Association www.afvitiligo.com For the EU campain, Vipoc asked to be supported by professional from Evoke Incisive Health N° 786297415977-28 2023 Annual fee paid by VIPOC will be 40.000 Euros.