3RD VIPOC CONFERENCE 21ST-23RD APRIL 2022 AMSTERDAM (THE NETHERLANDS)

A morning devoted to the activities and projects of each association: in spite of the sanitary situation of the last two years, it is important to note their perseverance in helping their members and maintaining their activities.

Many awareness and advocacy actions took place to reinforce patient support and link with public authorities around the world.

During two hours, patient organizations spoke about their initiatives to share best practices and to give others inspiration for the future. Live and online, this was a very interesting session.

You will find at the end of the newsletter the alphabetic organizations attendee list and sorted out per countries

Many priorities emerged from the 3 workshops (USA-UK, Europe, Africa online):

• • Awareness, training of GP doctors, strengthen collaboration between vitiligo international organizations, access to clinical trials results or surveys in which the associations took part, maximize testimonies about the impact of the disease on quality of life to enrich research data, more studies on psychological burden, more concerns about children and youth (bullying, isolation..), more advocacy towards health authorities.
  • These topics will be on the table of the new board to build the strategy for the next years.
  • In the afternoon, a very interesting presentation “Patient engagement at the European Medicines Agency” of the EMA (European Medicine Agency) by Maria Marvis – Patients and Consumers Liaison: many questions about marketing authorization for drugs and generics, national or European level for agreement, relation FDA-EMA, conflict of interest and transparency, importance of the patients within EMA, price of the drugs, etc.…

VITAL Project (Vitiligo International Task Force for an Agreed List of core date)

Pr Nanja Van Geel explained online the “Vital Project” aimed to standardize the assessment and monitoring of vitiligo patients in clinical trials, registries and clinical practice All participants, if volunteers to be members of the patients focus group, were invited to fill up the first questionnaire (what to measure, how, when, have more data about accepting or not a new drug, social impact …). More live/virtual meetings or electronics procedures (emails, surveys) will follow. Overall length of this study will be approximatively 5 years

Presentations were recorded with the institutional support of Pierre Fabre and will be posted at www.vipoc.org. This will allow each conference participant and all others not able to join the conference to have access to information and updated knowledge on vitiligo.

These presentations raised many questions from participating members and the exchanges were fruitful and constructive, both for the patient leaders and for the researchers. For example vitiligo and hair and scalp, side effects of Ruxolinitib, re-depigmentation after re-pigmentation, memory of the skin, cultural and social impact of total depigmentation, phototherapy and individual lamp, long-term treatment, more diversity for participants in clinical trials…

Highlight of the day, the session around the Guidelines, being written by the Vitiligo Task Force, (coordinated by the Professors Nanja Van Geel and Julien Seneschal)

Led by Pr Van Geel, with the collaboration of Pr Seneschal and Dr Wolkerstorfer, the audience responded with interest to the questions, some on sensitive topics as the length of the treatment, when and how to measure the results, or having “no treatment” as an option, included in the text or in the algorithm. This last topic has generated a lot of comments, to finally reach a consensus (“no treatment” will appear only in the text).
Patient organizations did ask to have a copy-free abstract of new vitiligo guidelines as a communication tool for patients and health professionals and to have a chapter to explain the role of support groups and patient organizations, needs of camouflage, and psychological prescriptions, etc.