COMITE INTERNATIONAL DES ORGANISATIONS DE PATIENTS ATTEINTS DE VITILIGO - VITILIGO INTERNATIONAL PATIENT ORGANIZATIONS COMMITTEE
Acronym: VIPOC
General Information
Identification Code: 823293449965-63
Website: [object Object]
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
EP Accredited Number: 0
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: [object Object]
EU Office
Address: 10 rue Lacuée75012 Paris
Post Code: 75012
City: PARIS
Country: FRANCE
Phone: [object Object]
Financial Data
New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
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
Members25 Percent: 0
Members50 Percent: 0
Members75 Percent: 0
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.
Structure
Structure Type: Structure
Is Member Of: In contact with International Dermatology Patient Organizations (www.globalskin.org)
French Skin Federation (patient alliance)
Organisation Members: N/A