COMITE INTERNATIONAL DES ORGANISATIONS DE PATIENTS ATTEINTS DE VITILIGO - VITILIGO INTERNATIONAL PATIENT ORGANIZATIONS COMMITTEE
Budget
€116,834
EP Access
0
accredited persons
Staff
3
0.3 FTE
EU Grants
None
Mission & 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.
EU Legislative Interests
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.
Interests Represented
Does not represent commercial interests
Member Of
N/A
Organisation Members
In contact with International Dermatology Patient Organizations (www.globalskin.org) French Skin Federation (patient alliance)
Additional Information
VIPOC EU starts its advocacy and awarness activities in 2023 and had several interactions with EU Members of the parliament. In 2024 VIPOC hold its 4th international Conference in Cairo (Egypt) and work on several awarness actions like World Vitiligo Day, Vitiligo White Paper in EU, and expand his member community worlsdwide up to 45 members form 30 countries. Before 2023 VIPOC did act on local in-countries and global areas
Commissioner Meetings
No recorded meetings with EU commissioners.