During the EADV conference held in Amsterdam from September 25 to 28, 2024, a total of four dedicated VIPOC board members took part in the event: Paul Monteiro (The Netherlands) Georg Pliszewski (Germany) Nicolle Maquignon and Jean-Marie Meurant (France). Their participation highlighted the collaborative spirit of the organization and its commitment to addressing vitiligo on a global scale.
In the realm of vitiligo, the conference featured an impressive lineup of 15 communications, 51 posters, and 17 speakers:
Meeting JM Meurant/Pr. Henry LIM (USA-AAD)
showed quite a good interest in JMM’s idea of a coalition/alliance, approved his approach with WHO, exchanged about the Global Vitiligo Atlas, interested in being a speaker for the CAIRO opening.
Meeting with Pharma Industries – ABBVIE – INCYTE- PFIZER
They all were very enthusiastic about the CAIRO VIPOC Conference presented by Jean-Marie Meurant and ready to participate in our workshops. They showed interest in our summit’s organization, which will raise awareness for youth/parents, educational tools in schools and sports activities.
Europe summit: They are willing to help us to go further in our action towards new EP and Commissions members to have better recognition of the disease in European countries- and try to give equal access to treatment to most of them, awareness on mental health.
They recognize the key role of the patients in :
- the management of the disease, with the venue of the new treatment (how to use it, phototherapy etc. – importance to disseminate information validated by scientists, through social media, and videos).
- the negotiation with health institutions about drug marketing (price, reimbursement)
They are very interested in JM Meurant’s idea of a coalition/ alliance with GVF, VRF, and VIS, which would help patients and researchers in managing the future of vitiligo
“Proposition from INCYTE –a conference in Europe with other organizations focused on Skin autoimmune diseases.”
Vitiligo Task Force (VTF)
Pr Nanja Van Neel and Julien Seneschal – Karen Ferez, from Mexico, were invited to participate in the VTF meeting.
Main topics:
- FDA Approval for RECELL (Avita Medical) – Cellular therapies –
- Information on VITAL Project: international collaborative projects to standardize assessment of vitiligo worldwide: What to measure: outcomes, How to measure: measurement instruments
- Presentation of Global Vitiligo Atlas -GLOVA – K Ezzedine, V Eleftheriadou, in collaboration with ILDS, VIS, VIPOC: To better understand vitiligo and its societal impact, publish an epidemiology atlas, create an international registry to study pharmacovigilance of vitiligo drugs (VIRTUAL) and reach a global consensus on disease severity (INTERCEPT).
- Clinical trials in progress for ACTIVE: collaborative Initiative of Worldwide Vitiligo Experts and Patients to Define Vitiligo Activity
- Presentation of CAIRO VIPOC Conference by JM Meurant
An interesting question was asked to the audience at the beginning of the session: Is vitiligo a cosmetic disease or not: 23% answered YES…
Beyond the white patches
Profs Böhm, K Ezzedine, Conrad, Wolkerstorfer
Mental Health and Psychosocial Quality-of-Life Burden Among Patients with Vitiligo,
- Five times more likely to have depression (majority females and Asian patients), low self-esteem
- According to Vaillant study: 60 % have mental health conditions.
- Difficulty in getting a good diagnosis: 6 months to 2 years, 56% of the patients were told that there was no treatment, or misdiagnosed
Importance of shared decision-making strategies:
Need to listen, inform, and explain to the patients about the lasting of the new treatment, recommendations for early treatment, holistic approach, and comorbidities. Shared decision-making is the key to a successful treatment
Pr Passeron about the new and future treatments (some take-home messages)
- Efficacy and good tolerance of ruxolitinib cream for localized vitiligo
- First encouraging results for severe or active forms with oral JAK
- JAK are only the first generation of treatments for vitiligo
- Combination approaches will be required for optimal repigmentation
Phototherapy session
About home devices: need to be a well-informed patient and have a regular follow up from the doctor. In the States, they have a pre-programmed device (how much, how long to use, pieces of advice, doses ) with a connection with the physician.
- VIPOC members: meeting with 2 representatives of Sri Lankan Organizations (new members), and Karen Férez, from Mexico, they all will come to Cairo.
- GLOBAL SKIN: launching of PRIDD (Patient-Reported Impact of Dermatological Diseases (PRIDD), the first fully validated dermatology impact measure applicable to all skin conditions.
Read more about the previous EADV Berlin 2023
