VIPOC 2022 : Amsterdam

The 3rd VIPOC Conference was held in AMSTERDAM (The Netherlands) from the 21st to the 23rd of
April 2022, and perfectly well organized by our friends Ed, Leo and Paul, and all the team from Vitiligo.nl,
the Dutch vitiligo Patient Association. Many thanks to all of them

 

20 leaders of vitiligo organizations from all over the world, close to 20 researchers and doctors, 6 representatives of the pharma industries, 1  photographer, all together over 50 persons attended this event, some on-line, others face-to-face, for 3 days.20 nations were present during  amsterdam VIPOC Conference 2022

 

 

PATIENT’S DAY- THURSDAY, APRIL 21ST

Despite all COVID19 issues, confinement, it was decided that  there was a need to connect again to reinforce awareness and advocacy worldwide, so a decision was taken that the VIPOC conference 2020 will was going to be held virtually on Friday December 4th ,2020

A morning devoted to the activities and projects of each association: in spite of the sanitary situation over 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.

Yan Valle - Jean-Marie Meurant – Richard Huggins

Yan Valle – Jean-Marie Meurant – Richard Huggins

WHY TO BUILD VITILIGO STRATEGY AND ADVOCACY FOCUS? ROUND TABLE

Dr. Huggins (Global Vitiligo Foundation – USA), Jean-Marie Meurant (VIPOC), and Yan Valle (Vitiligo Research Foundation USA) introduced the following workshops, organized around this triangle: patients, research, and pharmaceutical industries, together in the search to cure and care for vitiligo patients.

From his doctor’s point of view, Dr Huggins underlined the importance of the emotional aspect of the disease and its impact on daily life, which is too often unknown or minimized by doctors and researchers. Yan Valle explained with an interesting map, the patient journey and difficulties faced by the patient and their families, and Jean-Marie Meurant recalled the importance of this necessary triangular partnership patients/research/pharmaceutical industries to get efficient treatments as well with local and regional health authorities to get sufficient reimbursement of vitiligo dedicated medicaments.

WORKSHOP SESSIONS

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

This special day was led online, by Pr Nanja Van Geel. Nearly 20 leading vitiligo specialists from around the world presented –online or face-to-face- their recent works or studies on the different existing treatments: surgery, phototherapy, systemic treatment, oral and topical therapies, dietary supplements, vitamins….with a special session on the new ones coming up (Jaks, Ruxolitinib).

All participants, if volunteers to be members of the patient’s 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. The overall length of this study will be approximately 5 years A working group led by Dr. Viktoria Eleftheriaou, linked to the VITAL project, was dedicated to the impact of the treatment, and its burden on the quality of life.

Annual General Meeting

ANNUAL GENERAL MEETING
President’s report as Treasurer’s report were unanimously agreed.
Vipoc’s Annual General Meeting closed the day with the election of 9 new members;
From left to right Jean-Marie Meurant (France), Maya
Tulpule (India), Georg Pliszewski (Germany), Jackie
Gardner (USA), Nicolle Maquignon (France),
Stephen Taylor (USA), Sharon King (USA), Catherine
Davidson (UK), missing Gaone Matewa(South Africa)

SCIENTIFIC DAY – FRIDAY APRIL 22ND

This special day was led on line, by Pr Nanja Van Geel. Nearly 20 leading vitiligo specialists from around the world presented –on line or face-to-face- their recent works or studies on the different existing treatments: surgery, phototherapy, systemic treatment, oral and topical therapies, dietary supplements, vitamins….with a special session on the new ones coming up (Jaks, Ruxolitinib).

Presentations were recorded with institutional support of Pierre Fabre and will be posted at www.vipoc.org . This will allow each conference participants 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 totalepigmentation, 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)

PHARMA-DAY – SATURDAY, 23RD APRIL

Representatives of Incyte and Pierre Fabre laboratories agreed to meet VIPOC patient leaders, and explained their work and their perception of a successful collaboration.
The clear and explanatory presentation of the representatives of Incyte Laboratory showed how evident is their interest in vitiligo, as well as their willingness to include patients in their studies. The remarks and expressed needs of the participants have particularly caught their attention. In the same way, we have deepened our knowledge of their fields of activity and their view on our expectations.
After a dynamic presentation, the representatives of the laboratory Pierre Fabre offered 2 brainstorming workshops, one focused on our individual experience, and our needs coming from different country or culture, the other, oriented more specifically on our expectation for addition to drug treatment (supplements, creams etc…)
The quality of attention and listening that these stakeholders have granted us, is the concrete proof of their will to collaborate actively with patient associations.

For more detailed info, have a look a our newsletter

Our purpose is to improve the daily life of vitiligo patients, provide them with the support and information they need, and promote understanding, recognition, work on cure and care for vitiligo by the medical community and society.