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World Congress of Dermatology 2023

Our president Mrs Gaone Matewa and the board member Dr Maya Tulpule was one of the patient organisation representatives at the 25th World Congress of Dermatology. The sessions at the congress were very insightful, covered a wide range of topics related to vitiligo treatments, from historical approaches to the latest advancements. Such gatherings allow for the exchange of expertise among dermatologists, scientists, and other stakeholders, including pharmaceutical representatives from different countries.


Moreover, the exhibition of future health technology showcased how technology is being integrated into the healthcare sector. It’s particularly exciting to see advancements in digital health that facilitate diagnosis and track treatment progress. With these developments, the future of healthcare seems promising, as it allows for more accurate and efficient approaches to patient care.


Thank you to the organisers and sponsors of Congress for promoting inclusion by providing a platform for patients’ representatives to voice our views, share personal experiences, and present the realities of living with vitiligo. This direct engagement with dermatologists and other healthcare professionals allows for a more comprehensive understanding of the challenges, needs, and preferences of individuals with vitiligo.

After the Haute Couture show in DRC , the fight against vitiligo is on its way.

After the Haute Couture show on June 29, a new era will begin for the Franco-Congolese Association of Vitiligo and its president, Huguette Kalenga Fabiola.

Indeed, on June 29, 2023, an air of independence and liberation swept through the Congo River Hotel during the Haute Couture parade of vitiliginous people. The event was organized by the Franco-Congolese Association of Vitiligo (FCAV) with generous support from partners like the Vodacom Foundation and the Cédric Bakambu Foundation, among others.

The event occurred the day before, just a few hours prior to the celebration of the 63rd anniversary of the independence of the Democratic Republic of Congo. While the DRC was commemorating its independence, the people with vitiligo and the guests experienced this independence in a different, unique way.

In response to the organizers’ invitation, many guests were not familiar with vitiligo. They had questions about what it is, how it is contracted, and whether it’s contagious. Some of them were unaware that the renowned musician Michael Jackson had vitiligo and chose to lighten his skin to conceal the vitiligo spots. All these questions were answered during the vibrant event, and people were able to dispel their ignorance about vitiligo, gaining newfound understanding.

The night event featured a brief showcase of various treatment techniques that are already available. Participants had the opportunity to attend a presentation on ultraviolet ray treatment, which proved beneficial for them. Thanks to medical advancements, vitiligo can now be treated. The evening focused on the efforts led by AFCV, under the leadership of Huguette Kalenga Fabiola, on the banks of the beautiful and majestic Congo River.

“The primary goal is to have this condition officially recognized by the Ministry of Health and the Ministry of People Living with Disabilities and Vulnerable People. Additionally, we are currently campaigning to obtain authorization for the use of vitiligo treatment products that have already been approved in other places,” said Huguette Kalenga Fabiola.

On the evening of June 29, 2023, something extraordinary happened – a moment of liberation from prejudice. It was evident that when someone has vitiligo, the perceptions of those around them undergo a transformation. Unfortunately, individuals with this condition often become targets of curses and face various forms of discrimination and stigma. One such person who experienced this firsthand was Huguette Kalenga Fabiola. However, she is not alone in this struggle. Freddy Banza also went through similar experiences.

Freddy’s journey with vitiligo began at the doctor’s office when the first spots appeared on his lips, later spreading across his body. Despite facing this challenge, he managed to raise a family of three children. Unfortunately, his children faced mockery at school due to their father’s illness. Nevertheless, this situation opened up an opportunity for Freddy to talk to his children about vitiligo, helping them understand the disease better and encouraging them not to feel ashamed of accepting him as their father.

Before taking to the stage in front of the carefully chosen audience, Freddy Banza, who has vitiligo, shared his personal journey of contracting the condition over 15 years ago and the subsequent stigmatization he endured. He spoke about his extensive search for a cure that spanned the globe and how he eventually found solace in the Franco-Congolese Vitiligo Association, which eventually led to his participation in the fashion show on June 29, 2023. Following this remarkable haute couture event, Dr. Freddy Banza underwent a profound transformation.

“After stepping onto the runway, after being a part of this parade, I have left all the stigma behind me, and I now look toward the future with a positive outlook. It’s essential to change how others see us and embrace the uniqueness of our skin.”

Indeed, the future represents a continuation of the fight against vitiligo. The Haute Couture fashion show served as a platform for vitiliginous men and women to step out of the shadows and gain visibility. However, this is just the beginning, and they cannot rest on this achievement. Instead, they must act swiftly and energetically because the challenges ahead are immense.

Rolling up their sleeves is essential, as it signifies a commitment to actively engage in efforts to raise awareness, combat stigma, and seek further advancements in research and treatment for vitiligo. By working together and remaining determined, those affected by vitiligo can continue making strides in their journey towards acceptance, understanding, and ultimately, a more inclusive and compassionate society.


World Vitiligo Day 2023 Brussels: European advocacy for Vitiligo!

For the first time, we gathered 13 representatives from European vitiligo organizations in Brussels, the capital of Europe. This gathering was our way of participating in World Vitiligo Day, which is held every year on the 25th of June. Gaone Matewa, our VIPOC President from South Africa, joined us online during these three days, and Steve, a VIPOC board member from the USA, also joined online to celebrate WVD 2023 with Pr Amit Pandia from the Global Vitiligo Foundation.

Our main objective was to gather information, data, and advocacy items from our European members to see what could be done at the European level. We aimed to provide information to European stakeholders to make them aware of the needs of people living with vitiligo and, at the same time, include vitiligo in EU research funding.

This meeting offered us a fantastic opportunity to build stronger advocacy and recognition for vitiligo patients by the Members of the European Parliament (MEP) and other European stakeholders such as The Parliament Magazine, European Patients Forum, and Mental Health Europe (MHE).

Vitiligo is a real disease.

There is no doubt among our participants that vitiligo is a real disease. However, in Sweden, vitiligo is still not considered a disease, but only a cosmetic disorder or condition, similar to Germany two years ago. This classification implies fewer chances of receiving treatment.

Challenges faced by people living with vitiligo:

– Discrimination
– Enormous impact on mental health
– Low self-esteem, anxiety, depression. A recent study shows that around 25% of vitiligo patients have suffered from suicidal ideation.
– More visibility issues for people with dark skin, and in some cultures, difficulty in getting married due to societal beliefs.
– Avoidance of outdoor activities and certain sports (such as swimming)
– Impact on sexuality
– Anxiety and concerns among affected siblings and parents, sometimes even more than the patient themselves
– Fear of having children with vitiligo, leading to reluctance to start a family
– Harassment and bullying faced by children and youth
– Use of makeup to conceal vitiligo

Prevalence of the disease:

A recent study called “All Colors, All Skins, All Dermatoses,” conducted by Pr Julien Senechal in collaboration with Pierre Fabre Laboratories, surveyed 5,000 people worldwide over three years. This project aims to provide a snapshot of the prevalence of skin diseases and their consequences. However, no study has simultaneously evaluated the worldwide prevalence of vitiligo.

New treatment, new medicine – OPZELURA

Current situation in different countries:

– Increasing advertising for “miracle” products to treat vitiligo on the internet
– Limited information about Opzelura, and some incorrect information about its side effects, causing anxiety among people
– Some doctors have advised their patients not to use Opzelura, emphasizing the need for accurate information about the medicine
– Inequality in access to the new treatment. Germany already has access, while other countries will have to wait longer
– Uncertainty about the price or reimbursement of the treatment, which is the responsibility of national health authorities in agreement with politicians, regulators, healthcare professionals, and patient representatives


Following Pr Bekkenk’s presentation about the benefits and outcomes of phototherapy (narrow band UVB), we identified similar needs but different situations depending on the country:

– Treatment-related constraints: transportation and time for all of us
– Varied situations regarding reimbursement
– Difficulty finding clinics with the right equipment in Macedonia and Serbia, poor equipment in Sweden, and a decline in phototherapy devices in France
– Home phototherapy could be a better option if the cost is not too high

Sun protection:The need for sun protection is very high, but none of these products are reimbursed.

The Doctors

Additionally, doctors do not always have a holistic view of the disease and fail to investigate comorbidities often associated with vitiligo, such as alopecia, thyroid dysfunction, and diabetes. Some doctors do not adequately address the psychological impact or burden of vitiligo and fail to provide sufficient information about the disease and its treatments.

Collaboration with pharma industries/laboratories and researchers:

Our participants expressed the need for better relations with pharmaceutical industries at the national level. They also emphasized the need to improve scientific knowledge, remain independent from the pharma industries, and avoid conflicts of interest. More attention towards patients from pharma industries (patient centricity) and increased involvement in clinical trials and scientific studies were recommended. Research budgets are increasing, and there is a need for more research at the EU level.

Data and registries:

– Lack of a registry in Macedonia, resulting in unknown prevalence. The same situation exists in Sweden.
– Necessity to have data involving family members as well
– Netherlands is developing an app for this purpose
– Need for data at the European level, requiring more information from other European countries

Recommendations (Guidelines) – Pr Nanja Van Geel:

The Vitiligo Task Force is currently updating the “Recommendations for the Management of Vitiligo,” which will be published soon. The participation of patients in the writing of these new recommendations was particularly important.


WORKSHOP Vital focus group:

After Pr Nanja Van Geel’s presentation, we participated in a workshop on repigmentation. We discussed what, when, and how patients perceive their repigmentation (time, effects, which part of the body, etc.). Our answers will be reported for the Vital study (Vitiligo International Task force for an Agreed List of core data), which aims to establish a Core Domain Set of items to be reported in every vitiligo-related clinical trial, thus ensuring more uniformity in the collected data.

Areas of improvement and focus for collaboration:

– Advocacy for home therapy
– Collecting studies
– Strengthening relations with pharma industries
– Monthly Zoom meetings
– Developing books and comics for kids and youths
– Establishing connections with researchers, committees, psychologists, and sociologists
– Health professional education, including training for patients
– Collaboration with makeup professionals
– Creating social media groups and engaging with the media

Focus areas for advocacy, MEP, and other European health authorities:

– Recognition of vitiligo as a real disease
– Addressing the psychological impact and mental health issues
– Implementation of European projects
– Raising awareness in Europe
– Focus on kids and youth
– Promoting equality in access to medicine and democratic health policies

Interviews with representatives of European agencies, media, and Members of the European Parliament (MEP):

We conducted interviews with representatives from Mental Health Europe (MHE) and the European Patients Forum (EPF). These interviews were highly convincing, and our collaboration was strongly encouraged, particularly in the context of the Commission’s strategic plan for Mental Health. The EPF expressed interest in the participation of vitiligo patients in their “Patients” panels, which will be valuable for advocacy and awareness-raising at the European and national levels.

We also had an interview with The Parliament, a magazine primarily targeting professionals and political decision-makers, including Members of Parliament (MEPs). The interviewee showed interest in publishing an article on vitiligo and the challenges faced by patients, considering the new policies related to the pharma industry, equal access to medicines, and the Mental Health program.

During our visit to the European Parliament, we met with MEPs who expressed great interest in our pleas and information about the disease and its psychological impact. They were empathetic and understanding, and recommended leads towards working groups (Patients Forum) or European funds (HaDEA – European Health and Digital Executive Agency).


A significant achievement from our intervention was securing a written question on “equal access to medicines dedicated to vitiligo in all EU member countries.” The question will be addressed by MEP Elisebeta de Blasis (Italy) to the members of the Commission, representing the 27 EU countries. This intervention at the European level is a major step towards recognition of vitiligo patients and will also impact the national level.

We extend our thanks to our speakers and organizations involved in the event, including EUPATI (European Patients Academy on Therapeutic Innovation), All Colors, All Skins, All Dermatoses project, Pierre Fabre Laboratories, and various experts who shared their knowledge and insights.

About our organizations

Our organizations play a crucial role in publishing updated information, providing advice and support to people affected by vitiligo, implementing projects, assisting other countries in creating patient organizations, advocating for awareness at national and European levels, organizing communication campaigns, maintaining close connections with doctors, researchers, and dermatological academies, participating in congresses and conferences, and seeking funding. Membership growth and engagement are ongoing challenges, and we aim to involve more new and young volunteers.

We express our gratitude to our sponsors for making the 1st World Vitiligo Day Brussels 2023 a reality. This event served as the first advocacy days for vitiligo patients and their families in Europe.”

Vitiligo Kinder Tag

June is Vitiligo Awareness Month,

June 25th is World Vitiligo Day, AND from

June 16th -18th there is a Children with Vitiligo Weekend!


Being a child with Vitiligo comes with challenges, Therefore it is really important to offer the support necessary for each child – from medical advice to a big warm hug.

The Deutscher (German) Vitiligo-Bund e.V  organised a weekend away for Children with Vitiligo in Fulda, Hessen. As the only organisation for patients with Vitiligo in Germany, the support group planned a full agenda for children and their families.

The aim was to be open, listen, share experiences, build confidence and enjoy meeting other children with Vitiligo.  Through art and drawing, discussions with dermatologists, yoga sessions and meeting authors of Vitiligo books, the children and families had the opportunity to embrace and understand Vitiligo from all perspectives.

16 families and 24 children took part of this exciting weekend, to connect and come together through Vitiligo and it was a great success!

Parents and family were also invited to join and be part of the workshops, discussions, yoga, and other activities to help support the children with vitiligo.

After an introduction evening for all, the children made friends easily and the parents too.  Sharing their experiences, their stories, and seeing vitiligo in other children gave a positive vibe and strength to the weekend – this increased awareness and acceptance.

Dermatologists presented top tips and up-to-date information, book readings from an author, drawing and writing exercises for the children and adults – all contributed to an amazing mix of activities for the weekend.  A celebration of a birthday ended up in a water fight which helped us all cool in the summer heat and was very welcome!

Needless to say – longer together would have been better with so much to discuss and time to build relationships.  We hope that the weekend will be repeated again and again – for more families and children to benefit from.

Thank you Deutscher (German) Vitiligo-Bund e.V for the amazing organisation to make this happen.  June really is special month for us with Vitiligo.

The German Vitiligo Association Engages Attendees and Participants at the Inviva Festival

The German Vitiligo Association enthusiastically participated in the recent Inviva Festival in an effort to raise awareness of the condition and inform the public about the value of therapy. Approximately 50 people visited the association’s stand, where they had educational conversations regarding vitiligo.

The organisation teamed together at the festival to have a significant impact since they wanted to help as many affected people as they could and educate festival attendees about vitiligo. The booth developed into a center for knowledge sharing, providing visitors with the chance to learn about vitiligo and the available treatments.

The booth attracted a lot of interest and was the topic of multiple conversations throughout the event. People in attendance avidly sought out information and interacted with the organization officials, both those who were intrigued and those who had directly experienced vitiligo. Many people expressed their amazement at learning that there was a vitiligo society in Germany and praised the volunteers’ helpfulness.

The exhibit offered a variety of vitiligo-related subjects and ideas. The future of vitiligo treatment was actively explored, with new alternatives like Opzelura and systemic therapies being highlighted. In addition, discussions focused on children’s vitiligo and the best ways to support young people who have the illness. The necessity of understanding vitiligo as a disease requiring treatment rather than merely a cosmetic concern—an significant distinction that has been highlighted in Germany since 2021—was one of the main messages delivered.

Despite the absence of significant announcements or outcomes from the event, the booth successfully achieved its primary objective of spreading awareness and fostering informative discussions. The positive reactions and feedback from attendees were unanimous, affirming the booth’s impact. Attendees expressed gratitude for the association’s presence and appreciated the valuable information shared. Many visitors were pleased to learn about the available resources and support networks, demonstrating the importance of events like the Inviva Festival in providing education and building connections.

While the booth encountered no major challenges during the event, the association acknowledged the need to secure sufficient volunteers for future endeavours. As they reflect on their participation, the German Vitiligo Association is considering the possibility of returning to the next Inviva Festival with a booth, but a final decision has yet to be made.

Although no key partnerships or collaborations were formed during the event, the association’s presence served as a reminder of the ongoing work being done to support individuals with vitiligo in Germany. By actively engaging with attendees, the booth contributed to fostering a sense of unity among those affected by vitiligo and other conditions.

The German Association for Vitiligo’s participation in the Inviva Festival was a resounding success. The booth became a platform for raising awareness, sharing information, and promoting dialogue about vitiligo and its treatment options. As the association continues its mission to support individuals with vitiligo, events like the Inviva Festival play a vital role in spreading awareness, combating stigmas, and fostering a more inclusive society.






VIPOC Represented at the German Dermatological Society

The 52nd conference of the German Dermatological Society (DDG) was held from the 26th to the 29th of April 2023 at the City Cube in Berlin. It is a highly anticipated event that offers advanced and continuing education at the highest level. It is an opportunity for professionals in the field of dermatology to stay up-to-date with the latest developments, connect with colleagues, and exchange ideas.

One of the most exciting aspects of the DDG conference is the inclusion of representatives from patient organizations. This year, the German vitiligo association was in attendance, and they were proud to have a VIPOC representative present. VIPOC is a global initiative that works to raise awareness of vitiligo and improve the lives of people living with the condition.

The presence of a VIPOC representative at the DDG conference highlights the growing recognition of vitiligo as a significant dermatological concern. It also underscores the importance of patient perspectives in guiding research and treatment efforts.

The conference featured a hybrid combination of lectures and symposia, which were also offered in digital form. This format allowed for a wider audience to participate and provided greater accessibility to the latest advancements in clinical dermatology. Attendees had the opportunity to learn about the latest findings from research, including new insights into the underlying causes of skin disorders, and suggestions for daily practice.

One of the most exciting developments discussed at the DDG conference was the latest approval of Opzelura in the EU. Opzelura is a topical cream that has been shown to be effective in reducing the size and severity of vitiligo lesions. The approval of Opzelura represents a significant advance in the treatment of vitiligo and offers new hope to people living with the condition.

The event provided an opportunity for healthcare professionals, researchers, and patient advocates to come together and collaborate in an effort to improve the lives of people living with skin disorders. It is a testament to the progress that has been made in the field and a sign of even greater advancements to come.


As you know, 2023 is a special year for all of us and the start of vitiligo treatment journeys.

Yes, very special indeed, because this is the year of the arrival of a new drug.

Other molecules as anti-jak, topical creams, systemic treatments are under clinical trials/reviews in Europe by big pharma industries with interesting first results.


To get the drug prescribed by doctors, each drug should be validated by the EMA (European Medicines Agency located in Amsterdam, The Netherlands) before being distributed in EU countries after local specific access and price regulations. Patient organizations need to be involved in every step and ready to advocate through meetings, contribution files, etc.

Your patient organization will have to inform, advocate and raise awareness about vitiligo… so all the patients will be able to have same level of knowledge about the new drugs/trials and have access to treatment. The Patient organization roles are crucial, and our commitments are important.


With such good news, and tremendous steps (thanks to the researchers and the patients willing to participate to all the clinical trials) we have to learn together and to celebrate.


With the support of VIPOC and our sponsors,  we have organized an amazing event in Brussels (Belgium), during the World Vitiligo Day (WVD) celebration (25th June). The first meeting will be with the representatives of the European vitiligo organizations. The celebration will consist of 2 days for patient leaders’ meetings and one day for EU advocacy.

From June 23rd (arrival of the participants) to the 26th of June, the provisional program will be:

  • Saturday 24th and Sunday 25th: Vitiligo patient representatives meeting (workshop, advocacy, implementation of joint projects, training, etc.)
  • Monday 26th: advocacy meeting with EU representatives.

Conditions :

  • Transportation and accommodation costs (flight/train, hotel recommended by VIPOC will be supported by VIPOC and sponsors.)
  • One delegate per patient organization.
  • Saturday 24th and Sunday 25th are strongly recommended for participation. Monday 26th is also important to meet Country/EU representatives if delegates are available.


To make this meeting a success, we are counting on your participation. Please don’t hesitate to contact us for more information at  .

Good news from the Franco-Congolese Vitiligo Association our newest VIPOC member


With a lot of energy and willpower,


The President, Huguette Kalenga Fabiola, and the members of the Franco-Congolese Vitiligo Association  have carried out several awareness-raising actions in Kinshasa


  • a press conference in the premises of the Ministry of Public Health of Haut-Katanga, in the presence of Dr François Kapamba (Head Director of the Ministry of Public Health), dermatologists, clinicians and many media (TV, radio, press), to provide information on vitiligo and the discrimination suffered by patients.


  • the AFCV has officially launched its project to identify people with vitiligo in the Democratic Republic of Congo, so that the disease could be included in the directory of pathologies recognized by the Ministry of Public Health.


  • They also focus on the creation of a laboratory specifically dedicated to dermatological examinations.


  • They wish to obtain the necessary authorizations for access to the new treatment Ruxolinitib, recently approved by the FDA.

Awareness-raising activities et artistic projects

  • A flashmob in Kinshasa on January 14, 2023, with the participation of several people with vitiligo gathered around the hook “I am vitiliginous, I break the silence”.


  • New mascots, video, and Facebook page


The Vitiligo International Symposium 2022


The Vitiligo International Symposium (VIS) was held from December 9th to 11th in Bangalore (India), organized by the Global Vitiligo Foundation (GVF), with the help of Shweta Organization. It brought together nearly two hundred people, doctors, researchers, dermatologists, the greatest vitiligo experts, laboratories, and patients representatives, from all over the world, around the theme: Unloading the burden of vitiligo


“VIPOC was represented by Dr. Maya Tulpule from India, Shweta, Stephen Taylor from the USA, VStrong, Gaone Matewa from South Africa, Beyond Vitiligo and Nicolle Maquignon from the French Vitiligo Association. They had the opportunity to present their different associations, their achievements, and their expectations. They also had the privilege of accessing scientific communications, as well as participating in rich formal and informal exchanges, with the participants during these three days.


Scientific Presentations


Dr Hamzavi, Dr Parsad, Dr Esmat – GVF

The communications highlighted the complexity of the disease’s pathophysiology, including genetic aspects, autoimmunity, environmental factors, and oxidative stress. (Dr Hamzavi, Parsad, Dr Esmat).


Scientific papers have, among others, addressed:

– comorbidities especially with the thyroid (Dr Benzekri- Morocco)

– risk of cancer, lower in people with vitiligo (Dr Singh, India)

– importance of the psychological factors (R Carafello – England)

– correspondence between the distribution at the level of the skin of segmental vitiligo and the subcutaneous course of the superficial arterial vessels (Dr. Gauthier)

– phototherapy (Dr Narayan -Netherlands)

– various tools for measuring disease progression (Vitiligo Diéasse Activity Score – VIDA, Vitiligo Signs Activity Score -VSAS, Vitiligo Extent Scores- VES) (Dr R Mogawer – Egypt)


Left to right – Prof Picardo, Dr Gauthier, Dr Raboobee, G Matewa (VIPOC)


Numerous presentations highlighted the significant advances in research in the treatment of vitiligo, fulfilling hopes expressed for a long time. This is the case with JAK inhibitors, a very real promise:

  • Recently FDA Approved: Topical – Ruxolitinib (Jak1/Jak2)

To date the only specific treatment for vitiligo: the results of various clinical trials reveal its good effectiveness on all parts of the body, including the feet and hands – often more difficult to repigment. It can be used alone or better, for optimal benefit, associated with phototherapy, recalls Prof Passeron in his presentation.


  • Other treatments under study;

Topicals: Tofacitinib, Cerdulatinib, Cerdulatinib,

Systemic: Ritlecitinib (Pfizer), Baricitinib, Brepocitinib

More specific studies on the feet and hands are in progress, led by Prof Hyun Jeong Ju, (Korea) and Dr Yasmin Tawfik (Egypt).

Other forms of treatment are also possible (laser, grafts, etc.) depending on the specificity of the vitiligo and the patient’s expectation. Total depigmentation is also presented as a solution, which must be very carefully considered and requires that the patient be very well informed of its realization and its long term consequences (D M Abdallah – Egypt).

Alternative medicine and vitamin D intake (Prof Grimes -USA) were also the subject of the presentation.

The BURDEN, central theme of this VIS


Dr Pandya

Dr Parsad, Dr Pandya and Dr Hamzavi opened the discussion concerning this burden that vitiligo patients suffer. They also discussed its impact on their own quality of life, loved ones, professional and intimate life. Vitiligo can no longer be neglected and must be treated with  care.

An observation and some figures about these “white spots that affect the soul“, as Dr Hamzavi said.

  • Lack of confidence and lack of awareness/information among both patients and doctors.
  • Great frustration of doctors (nearly 70%) who do not see the proposed treatment succeed, frustration of patients (nearly 50%) who do not follow their treatments (too long, few immediate results)
  • More than 50% of patients hear during their first consultation “There is nothing to do for vitiligo”
  • The economic burden of vitiligo is not sufficiently assessed: hospitalization due to comorbidities, mental health, cost of treatment and constraints (example: phototherapy: travel, duration, etc.)
  • 71% of people are worried about the progression of the disease, 57% express a feeling of shame, 55% are sad and depressed or even suicidal, significant psychiatric comorbidities, 25% show a lack of self-confidence

Epidemiological studies and creation of the “Global Vitiligo Atlas”

Professor Ezzedine recalled the importance of epidemiological studies, which is essential for understanding and evaluating the weight of the burden and its impact on the various populations affected by the disease, considering their geographical location (prevalence, stigmatization in certain countries, rejection etc.).

He calls for the development of registries, cohorts, not only in Europe, but worldwide.  Research needs data from patients from all countries/continent.

This could lead to the creation of the “Global Vitiligo Atlas” in order to give official recognition to this “burden” and allow it to be included in a global strategy for the treatment of the disease and the reimbursement of related costs.


Special workshop with Proff Ezzedine, indian patients (some being Shweta members) and VIPOC representatives.

In 2015, the criteria used by researchers to assess the effectiveness of clinical trials focused on three points: repigmentation, adverse effects and the maintenance of this repigmentation. Other criteria (quality of life, progression of the disease, etc.) have since been recommended, but studies show that these have not always been considered.

The questionnaire “What do you expect from your treatment?” What results are truly meaningful to you?” distributed to the participants made it possible to understand the diversity of their expectations.Their responses were not always in agreement with those of the researchers, and but they brought out the existent unanimity about the impact of the vitiligo on their quality of life – in India, the stigmatization is very strong.

Indeed, for the researchers, it is a question not only of obtaining convincing results as to the clinical efficacy of the treatment but also of considering the experience of the patients, their feelings and their expectations, during and following the treatment.

Surveys must be carried out more broadly among patients (children and adults) and their relatives, to obtain a consensus on a standardization of outcome measures (Core outcomes set) and lead to studies that are easily exploitable by all researchers, and essential for health policy makers.














Paul Monteiro presentation at EADV


The EADV (European Academy for Dermatology and Venereology) held in Milan from September 7 – 10, brought together more than 600 speakers in more than 170 sessions presenting the highest quality research in dermatology and venereology. More than 13000 visitors attended this conference. Vitiligo was presented by international dermatologists.Lectures were given on, among others, the pathogenesis of hypopigmentation, coping with vitiligo, the psychological impact of vitiligo.


During a selection session for nurses, part of the scientific program and organized by Prof. Dr. Dr Nanja van Geel from UZ Gent (Belgium) both dermatologists and nurses could participate in this session. In this session Nanja van Geel (prof. UZG) discussed the subject of Vitiligo in the clinical practice of a tertiary center, Sylvia Transez, (UZG nurse) ‘Nurses, the bridge between the vitiligo patient and their doctor’.


Paul Monteiro (President, The Netherlands) gave a presentation about ‘Vitiligo, living in contrast’ and  Dr. Patrick  Kemperman (Psychodermatologist Amsterdam UMC, The Netherlands ) addressing the psychosocial impact of vitiligo.


Paul Monteiro, also a member of the steering committee of the VIPOC (Vitiligo Patients Organization Commitee)_ also presented the objectives of the VIPOC: Worldwide alliance of vitiligo patient organizations, founded in 2018,   official NGO based in Paris. Patient leaders and scientists will be sharing views, expertise, projects,with researchers, dermatologists, pharma industries representatives, in fact VIPOC is building bridges between the world of the patients  and the world of the researchers, dermatologists, pharma industries.


Also some members of the Vitiligo Task Force including the representative of VIPOC, Paul Monteiro, came together in a special meeting on a update on the articles containing the Vitiligo Guidelines- Consensus Statement. The goal is to have a final version approved of the worldwide endorsed guidelines for the diagnosis and management of vitiligo. Important in the guidelines : Quality of life measurements should be considered in all patients and intervention, guidance and support should be offered if required.