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Vitiligo and Us Comic Book

The French Vitiligo Association is delighted to unveil its inaugural comic book, “Vitiligo and Us…” – specially crafted for young individuals and those in their circles! This groundbreaking publication aims to empower people with vitiligo, fostering a deeper understanding and facilitating improved communication. Dive into its pages online and share it with your loved ones!

Find it here: 

Doctors’ training on vitiligo in the D.R.C

The Association Franco-Congolaise du Vitiligo (AFCV), which was created in December 2021 with the support and sponsorship of the AFV, has been very active ever since. She recently initiated a very important training course for doctors (dermatologists, anatomical pathologists, nurses, etc.) in Haut-Katanga (province of the Democratic Republic of Congo) specifically on the subject of vitiligo.

Doctors’ interest in vitiligo

 

Upadacitinib Meets Primary End Point of Phase 2 Trial for Vitiligo and Advances to Phase 3

AbbVie recently announced that its phase 2b study investigating upadacitinib (Rinvoq) for the treatment of adults with nonsegmental vitiligo met the primary end point of percent change from baseline in the Facial Vitiligo Area Scoring Index (F-VASI) at week 24 with the 11 mg and 22 mg doses versus placebo. Overall, the percent reduction from baseline in F-VASI at week 52 was numerically greater than results at week 24 for all upadacitinib doses, and no new safety signals were found.AbbVie announced at the European Academy of Dermatology and Venerology (EADV) Congress in Berlin, Germany, that based on this data, it will be advancing its clinical trial program of upadacitinib for vitiligo to phase 3.1

Key findings from the data include:

  • At week 24, upadacitinib achieved the primary end point of percent change from baseline in F-VASI with 11 mg and 22 mg doses versus placebo
  • Higher response rates were observed with upadacitinib versus placebo in secondary end points, including F-VASI 75 at week 24 with the 11 mg and 22 mg doses and Total Vitiligo Area Scoring Index (T-VASI) 50 at week 24 with the 22 mg dose
  • The mean percent reduction from baseline in F-VASI was numerically greater at week 52 than results at week 24 for all upadacitinib dose groups
  • Response rates observed for F-VASI 75 and T-VASI 50 at week 52 were numerically greater than those at week 24 for all upadacitinib dose groups

“There is a high unmet need in vitiligo, with no systemic treatment options approved, leaving patients frustrated in seeking options for re-pigmentation of the skin,” said Roopal Thakkar, MD, senior vice president of development and regulatory affairs and chief medical officer at AbbVie, in the news release. “We will continue to apply our significant experience in advancing research and driving innovation in treatments for immune-mediated diseases, including underserved diseases with high burden on patients, such as vitiligo.”

Treatment-emergent adverse event (TEAE) rates were similar with upadacitinib and placebo in period 1. The most common TEAEs included COVID-19, acne, headache, and nasopharyngitis. Numerically higher rates of serious TEAEs and TEAEs leading to study drug discontinuation were observed in the upadacitinib 22 mg group versus the other groups.

According to the news release, “One death adjudicated as undetermined/unknown cause and deemed by the investigator to have no reasonable possibility of being related to study drug occurred in the upadacitinib 22 mg group (period 1). One adjudicated event of nonfatal ischemic stroke occurred with upadacitinib 11 mg (period 2) in a patient with known cardiovascular risk factors. One event of malignancy (breast cancer) occurred with upadacitinib 11 mg (period 2) in a patient with positive family history of breast cancer.”

During the study, one event of a serious infection, COVID-19 pneumonia, was reported in the upadacitinib 22 mg group. There were no adjudicated events of venous thromboembolism, gastrointestinal perforation, or active tuberculosis.

“Vitiligo impacts millions of people globally, and there is no cure. The disease can have a great impact on patients’ physical and mental health, as depigmentation of the skin can be severe,” said Thierry Passeron, MD, PhD, professor and chair of the department of dermatology at the Université Côte d’Azur, in the news release. “In vitiligo, it can take time to see optimal skin re-pigmentation during treatment, which makes long-term studies critical to providing valuable insights on a treatment’s meaningful impact for patients.”

Source: 

Image Credit: Envato Elements

New therapy for vitiligo patients

For a long time, vitiligo was considered purely a cosmetic issue, but the disease often causes significant stress for those affected. What effective therapies are available? Increased public acceptance, exemplified by models like Winnie Harlow, has brought vitiligo to international catwalks. The development of new therapies and active ingredients provides hope for vitiligo patients in achieving a better quality of life.

Tedious and individual: Treatment of vitiligo

Vitiligo is a chronic skin disease where the body’s own immune system attacks the pigment-forming cells. Treating vitiligo has long been considered challenging and unpredictable in dermatology. Patients who visited dermatologists with this condition were often met with shrugs and the information that nothing could be done. However, this is no longer the case today. “We can now treat vitiligo much more effectively, thanks to recent years’ important insights into the disease’s development and causes.” – Prof. Dr. Michael Sticherling, Deputy Clinic Director, Dermatology Clinic, University Hospital Erlangen.

Doctors use black light to visualize the areas of skin where the pigment-forming cells have been mostly or completely destroyed. The cause is likely an overreaction of the immune system in combination with hypersensitivity to oxygen radicals. The exact causes are not entirely clear, and it is probably an interaction of various processes that differ among patients.

The causes of vitiligo are diverse, and there are different theories. One theory suggests an autoimmune reaction, where the body’s defense system targets the melanocytes, the pigment cells of the skin. Another theory suggests a disrupted redox ratio, meaning an imbalanced oxygen radical ratio in the melanocytes, as a significant factor. There is also a theory that suggests increased melanocyte migration, as well as a theory that combines all three factors. It is likely that all three theories hold some truth and may vary in importance and relevance among different patients.” – Prof. Dr. Michael Sticherling, Deputy Clinic Director, Dermatology Clinic, University Hospital Erlangen.

Differently effective: Therapies for vitiligo

Cortisone, an active ingredient that suppresses the immune system, can be used for external treatment of vitiligo. However, due to its side effects, it should not be used as a long-term therapy. “The effectiveness of cortisone varies greatly, with some patients responding well, and different body regions responding differently. The main problem with cortisone usage lies in its side effects, such as skin thinning and increased susceptibility to infections. In the case of a chronic disease like vitiligo, long-term cortisone therapy is not justifiable.” – Prof. Dr. Michael Sticherling, Deputy Clinic Director, Dermatology Clinic, University Hospital Erlangen.

Another possible active ingredient for external use is known as calcineurin inhibitors:  “Calcineurin inhibitors also have an immunological effect. Some smaller studies have shown effectiveness, particularly in combination with UVB light. However, the effectiveness is not 100 percent, and it does not work for all patients.” – Prof. Dr. Michael Sticherling, Deputy Clinic Director, Dermatology Clinic, University Hospital Erlangen.

Vitiligo therapy often involves a trial-and-error approach to find what works best for each individual patient. It requires patience and perseverance until the therapy is successful. This also applies to phototherapy, which includes local irradiation with UVB light or whole-body phototherapy. The short-wave light is intended to stimulate the formation of new pigment cells. “We also use UVB light for other skin diseases, but it should be viewed critically due to its potential to promote skin aging and even the development of skin cancer. This is an important consideration that needs to be taken into account for vitiligo patients

“We also use UVB light for other skin diseases, but it should be viewed critically due to its potential to promote skin aging and even the development of skin cancer. This is an important consideration that needs to be taken into account for vitiligo patients.” – Prof. Dr. Michael Sticherling, Deputy Clinic Director, Dermatology Clinic, University Hospital Erlangen.

New therapies: JAK inhibitors in vitiligo

Prof. Sticherling is currently researching new active ingredients called JAK inhibitors. These drugs can suppress the specific immune system dysfunction in the skin of vitiligo patients, although not all patients respond to them. “This group of drugs, or active ingredients, was discovered more or less by accident while treating other diseases, particularly serious tumor diseases. It was found that vitiligo, coincidentally present at the same time, decreased under the therapy. Only then were these drugs further developed.” – Prof. Dr. Michael Sticherling, Deputy Clinic Director, Dermatology Clinic, University Hospital Erlangen.

 

JAK Inhibitors

Janus kinase inhibitors include several active ingredients used for autoimmune diseases, among other conditions. In March 2023, the European Medicines Agency (EMA) and the Federal Institute for Drugs and Medical Devices (BfArM) published a warning letter for some of these active ingredients in coordination with the manufacturers. This update provides information on warnings and precautionary measures for the use of already approved drugs containing these active ingredients. (Reference)

A new cream with a JAK inhibitor was recently approved in the EU and will be covered by statutory health insurance companies. Georg Pliszewski from the Vitiligo self-help organization “Deutscher Vitiligo-Bund e.V.” expressed his thoughts

 

“It definitely marks a new chapter in vitiligo therapy, as it has just been approved in Germany and Europe. However, we are yet to determine the side effects of this new product, this new cream. It will be the responsibility of doctors, particularly dermatologists prescribing the cream, to monitor their patients.”-Georg Pliszewski, German Vitiligo Federation e.V.

Research into new active ingredients has stimulated studies on vitiligo, its causes, and potential therapies. This represents a positive development for Georg Pliszewski. However, the decision regarding therapy, whether to pursue it or not, remains a careful consideration for patients in consultation with their doctors.

Many affected individuals have had positive experiences with psychotherapeutic support and engaging with other patients in self-help organizations.”

Credit for all Images : Bild:BR

Source

Incyte Announces European Commission Approval Of Opzelura® (Ruxolitinib) Cream For The Treatment Of Non-Segmental Vitiligo With Facial Involvement In Adults And Adolescents

April 20, 2023 at 10:21 AM EDT
  • Opzelura® (ruxolitinib) Cream is the first approved treatment in the European Union (EU) to address repigmentation in non-segmental vitiligo
  • Phase 3 data supporting the approval show treatment with Opzelura resulted in improved facial and total body repigmentation, sustained and continued improvements with longer duration of treatment

 

 

WILMINGTON, Del.–(BUSINESS WIRE)–Apr. 20, 2023– Incyte (Nasdaq:INCY) today announced that the European Commission (EC) has granted a marketing authorization for Opzelura® (ruxolitinib) cream 15mg/g for the treatment of non-segmental vitiligo with facial involvement in adults and adolescents from 12 years of age. Opzelura is the first and only approved treatment in the European Union (EU) to offer support for repigmentation in eligible patients with non-segmental vitiligo, a chronic autoimmune disease characterized by depigmentation of skin and reduced quality of life.

The EC decision follows the positive opinion received from the European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) earlier this year and is applicable to all 27 European Union Member States, Iceland, Norway and Liechtenstein.

“The approval of Opzelura by the European Commission represents a significant advancement for people living with non-segmental vitiligo with facial involvement who, until now, had no approved medical treatment to address repigmentation,” said Hervé Hoppenot, Chief Executive Officer, Incyte. “This approval wouldn’t have been possible without the support of the vitiligo patient and medical community, and the efforts of our research and development teams. We will now work across individual countries in Europe to bring this much awaited therapy to eligible patients seeking to treat their vitiligo.”

The EC decision is based on data from two pivotal Phase 3 clinical trials (TRuE-V1 [NCT04052425] and TRuE-V2 [NCT04057573]), evaluating the efficacy and safety of Opzelura versus vehicle (non-medicated cream) in more than 600 people with non-segmental vitiligo, age 12 and older. Results from the TRuE-V program showed that treatment with Opzelura resulted in significant improvements in facial and total body repigmentation versus vehicle as shown by the number of patients reaching the facial and total body Vitiligo Area Scoring Index (F-VASI-T-VASI) endpoints at Week 24 compared to vehicle and in an open-label extension at Week 521.

Results at Week 24, which were consistent across both studies, showed that 29.8% and 30.9% of patients treated with Opzelura achieved ≥75% improvement from baseline in the facial Vitiligo Area Scoring Index (F-VASI75), the primary endpoint, compared to 7.4% and 11.4% of patients treated with vehicle in TRuE-V1 and TRuE-V2, respectively. At Week 52, approximately one in two of Opzelura-treated patients achieved F-VASI751.

Additionally, at Week 24, more than 15% of patients treated with Opzelura achieved ≥90% improvement from baseline in F-VASI (F-VASI90), compared to approximately 2% of patients treated with vehicle. At Week 52, approximately one in three of Opzelura-treated patients achieved F-VASI90.

There were no serious treatment-related adverse events related to ruxolitinib cream and the most common adverse reaction was application site acne1.

Pivotal Phase 3 data supporting the European Commission decision were also published in The New England Journal of Medicine.

“The approval of Opzelura is welcome news for dermatologists and eligible patients in Europe who often face challenges managing vitiligo,” said Prof. Dr. Markus Böhm, Department of Dermatology, University of Münster Germany. “TRuE-V is the first large-scale clinical trials program in vitiligo and its results clearly demonstrate the clinically meaningful improvements in facial and total body repigmentation seen with Opzelura and its potential to further optimize patient care and outcomes.”

Vitiligo is a chronic autoimmune disease characterized by depigmentation of skin that results in patchy loss of skin color from the progressive destruction of pigment-producing cells known as melanocytes. Over-activity of the JAK signaling pathway is believed to drive inflammation involved in the pathogenesis and progression of vitiligo. In the European Union, EEA countries and UK diagnosed vitiligo prevalence is estimated to be ~1.5 million patients2,3, with approximately 8 in 10 patients suffering from non-segmental vitiligo4, and a subset of whom has facial involvement and seeking treatment. Vitiligo can occur at any age, although many patients with vitiligo will experience initial onset before the age of 305.

“Vitiligo is a chronic autoimmune disease that impacts many aspects of a person’s life,” said Jean-Marie Meurant, Vice-President of the Vitiligo International Patient Organizations Committee (VIPOC). “The arrival of new treatment options are important for our community as it gives people with vitiligo something they have long been hoping for: the choice to treat their disease.”

About Opzelura® (ruxolitinib) Cream 15mg/g
Opzelura, a novel cream formulation of Incyte’s selective JAK1/JAK2 inhibitor ruxolitinib, is the first and only topical JAK inhibitor approved for use in the European Union (EU), indicated for the treatment of non-segmental vitiligo with facial involvement in adults and adolescents from 12 years of age.

In patients with non-segmental vitiligo with facial involvement, Opzelura is approved for topical use twice daily to the depigmented skin areas up to a maximum of 10% body surface area. Satisfactory repigmentation may require treatment with Opzelura for more than 24 weeks.

Opzelura is approved in the U.S. for the topical treatment of non-segmental vitiligo in patients 12 years of age and older and for the topical short-term and non-continuous chronic treatment of mild to moderate atopic dermatitis (AD) in non-immunocompromised patients 12 years of age and older whose disease is not adequately controlled with topical prescription therapies, or when those therapies are not advisable.

Incyte has worldwide rights for the development and commercialization of Opzelura. In April 2022, Incyte entered into a strategic alliance agreement with Maruho Co., Ltd. for the development, manufacturing, and exclusive commercialization of ruxolitinib cream for treatment of autoimmune and inflammatory dermatology indications in Japan.

Opzelura is a trademark of Incyte.

About Incyte Dermatology
Incyte’s science-first approach and expertise in immunology has formed the foundation of the company. Today, we are building on this legacy as we discover and develop innovative dermatology treatments to bring solutions to patients in need.

Our research and development efforts in dermatology are initially focused on leveraging our knowledge of the JAK-STAT pathway. We are exploring the potential of JAK inhibition for a number of immune-mediated dermatologic conditions with a high unmet medical need, including atopic dermatitis, vitiligo, lichen planus, lichen sclerosus and prurigo nodularis.

About Incyte
Incyte is a Wilmington, Delaware-based, global biopharmaceutical company focused on finding solutions for serious unmet medical needs through the discovery, development and commercialization of proprietary therapeutics.

Source

____________________
1 Opzelura® (ruxolitinib) cream 15mg/g. Summary of Product Characteristics (SmPC). Incyte; April 2023.
Mohr N, et al. Epidemiology of Vitiligo – A Dual Population-Based Approach. Clinical Epidemiology. 2021 May 26; 13:373-382.
3 Bibeau K, et al. Vitiligo prevalence and quality of life among adults in Europe, Japan and the USA. Journal of the European Academy of Dermatology and Venerology. 2022; V36(10), P 1831-1844.
4 Gandhi K, et al. Prevalence of Vitiligo Among Adults in the United States. JAMA Dermatol. 2022 Jan 1;158(1):43-50.
Frisoli M, et al. Vitiligo: mechanisms of pathogenesis and treatment. Annual. Review of Immunology. 2020; 38(1):621-648.

The first step for a medicinal product for vitiligo has been authorized in Europe

On February 23, 2023, the European Medicines Agency (EMA) published a positive opinion for the use of the molecule Ruxolitinib™ in cream form (Opzelura™ from Laboratories Incyte Biosciences) as part of a non-segmental vitiligo for adults and adolescents over 12 years of age.

Decision extract published by the EMA

 

Read the full version here: Opzelura: Pending EC decision | European Medicines Agency (europa.eu)

By 1 May 2023, the European Union will have to publish a marketing authorisation in one, several or all EU member countries.
Following this decision, each member country will be able to define the principles of coverage and reimbursement of the medicine by the health system in the country concerned.
The process to get the medicine at a pharmacy counter takes many months and sometime several years. In each country processes are complex. Therefore, patient organizations advocacy is crucial to speed the process and to get the right access and reimbursement for all vitiligo patients.
The more we will be united in Europe in all steps of the process, the more we will be getting advantages for all vitiligo sufferers.
Building patient impacts contributions, looking for combined advocacy files, etc. will make patient defense more effective and robust.

For  example:
In France, after obtaining a marketing authorisation, a pharmaceutical company can freely set the price of a medicine.
For it to be reimbursed by Social Security, the laboratory must submit an application to the High Authority of Health (HAS). The opinion issued by the HAS Transparency Commission is on the SMR (Medical Service Rendered) or the ASMR (Improvement of the Medical Service Rendered). Which in the context of vitiligo in the absence of a drug approved today should only concern the Medical Service Rendered.
This opinion is then sent to the Economic Committee for Health Products (CEPS) and the National Union of Health Insurance Funds (UNCAM). A negotiation phase then opens on the amount of the coverage (price and percentage of reimbursement).
The final decision to include a medicinal product for reimbursement falls within the competence of the Ministers responsible for Health and Social Security and is published in French Official Journal.

 

VIPOC Appoints Mrs. Gaone Matewa As New President

                        

NEWS RELEASE

 

FOR IMMEDIATE RELEASE

 

Vitiligo International Patient Organizations Committee (VIPOC)

12/09/2022

VIPOC Appoints Mrs. Gaone Matewa As New President

VIPOC appointed Mrs Gaone Matewa as the New President of the organisation. An experienced leader, Mrs Gaone Matewa will succeed Mr Jean-Marie Meurant and assume the responsibilities.

Gaone Matewa is a dedicated marathon runner, a proud mother of two busy boys, and a published medical author on the topic of vitiligo. She is also the founder of Beyond Vitiligo and Beyond Vitiligo Botswana.

Matewa has always believed in expanding the awareness of vitiligo to other countries and acquiring as well as conducting research on this disease. This inspired her to attend as many skin conferences as possible to do so. She then met Meurant at one of these conferences and she, “grew fond of his passion for the research and solutions around vitiligo.”

“Jean Marie showed great leadership skills and believes in the power of collaboration and unity. He believed that challenges surrounding vitiligo should not be conquered separately and thus, VIPOC was formed. I became a member of the VIPOC family in its early stages in 2017 because I believed in this vision.  The problems faced by vitiligo patients are the same everywhere I believed VIPOC to be the best manner of taking vitiligo support and research across the globe.” Matewa Said

Meurant expressed how proud he is of Matewa regarding the New presidency and stated that she would be a great fit as president.

Gaone has collaborated with some of the top dermatologists, medical researchers, and members of the international skin community. She has also been a part of the Global Skin organisation, a global non-profit devoted to advancing knowledge about and research into the other 41 skin disorders.

Just to name a few, Gaone has been named by Mail & Guardian South Africa as one of the 200 most influential young South Africans. Additionally, True Love South Africa nominated her for the 2019 Women Making a Difference class award.

She received a BBA degree in International Finance & Investment as well as an Honors in Risk Management. She is a qualified accountant with 10 years of experience, and she sits on few boards.

About VIPOC

The Vitiligo International Patient Organizations Conference is an official association based in Paris. Our purpose is to improve the daily life of vitiligo patients, provide them with the support and information they need, promote understanding, recognition, and work on cures and care for vitiligo by the medical community and society.

The community and support organisation for vitiligo patients’ groups, was created in 2018 after multiple patient organisations had discussed the idea of banding together to improve the awareness and the lives of people with vitiligo.

 

 

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

50 attendees – 20 nations

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

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.

PATIENT’S DAY- THURSDAY, APRIL 21ST

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

WHY TO BUILD VITILIGO STRATEGY AND ADVOCACY FOCUS? ROUND TABLE

Yan Valle - Jean-Marie Meurant – Richard Huggins

Yan Valle – Jean-Marie Meurant – Richard Huggins

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 of 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 the daily life, which
is too often unknown or minimize by doctors and researchers. Yan Valle explained with an interesting map, the patient journey and difficulties faced by 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 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

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 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, and vitamins….with a special session on the new ones coming up (Jaks, Ruxolitinib).

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.

SCIENTIFIC DAY – FRIDAY APRIL 22ND

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.

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, and vitamins….with a special session on the new ones coming up (Jaks, Ruxolitinib).

TWO YEAR STRATEGIC PLAN

Yes, we can say that conference was a success, we have taken a big step together, and now we have to continue on our way, and work on these issues that remain sensitive and important for our patient community.

VIPOC in the world

  • develop regional meetings, once a year (Europe, Africa, America and South-America)
  • celebrate World Vitiligo Day together on the same theme
  • reinforce our European actions and enhance our network
  • get in contact with South-American and other Asian organizations
  • help to create new patient organizations
  • participate in EADV, AAD, VIS congresses

VIPOC and the medical field

  • centralize the studies on Quality of life and others
  • focus on children and family circle
  • highlight the psychological and emotional criteria
  • Guidelines: importance of the section “Others interventions” for the patients, to be discussed with the editors studies on alternatives medicine
  • think about having an Ethic CommitteeVIPOC operation and conference organization
  • develop our communication tools and look for people having real competency in IT, social medias, graphics, digital etc..
  • provide a retro-planning and precise script for the different actions
  • send electronic survey to the participants to evaluate the Conference
  • review the organization of lunches and diners

The objectives of the 2022 Conference, on a worldwide basis, are to:

  • Share local, regional awareness initiatives and best practices;
  • Improve role/place of patient organizations in study and medical processes;
  • Increase the understanding of new vitiligo physiopathology passes;
  • Develop support and interactions with researchers and dermatologists;
  • Get updated information regarding vitiligo clinical trials and results;
  • Build advocacy actions and roles for the coming years.