While the year 2022 didn’t unfold in the way any of us had hoped, we are grateful for what we accomplished with your support as we look back. The VRF has advanced the worldwide vitiligo community, from education of dermatologists, to general public awareness, to support of the patient activists. Here are just some of our significant accomplishments from the past year.
Research and Development
In our Vitiligo Drug Pipeline Analysis and Market Insights report we keep tabs on biopharma companies with R&D activities in vitiligo. Our watchlist grew from 35 to 41 companies in the recent year. We are monitoring situation in three critical areas: mechanism and preclinical information, previous clinical results and important events.
While their individual goals may be different, many of the companies on this list and research universities are united by similar pursuits. Fifteen clinical trials in vitiligo were started last year, ranging from well-known 5-Fluorouracil and Latanoprost to Rapamycin and PF-07038124, most of them in topical form.
We also supported publication of the challenging hypothesis of electromagnetic waves for vitiligo treatment.
The VRF's Scientific Advisory Board has monitored the pandemic's effect on vitiligo care since it's onset, which coincidentally aligned with vitiligo session at IMCAS congress in Paris in January 2020. We have encouraged the medical community to report outcomes of COVID-19 in individuals with vitiligo. Following two and half years of investigations into COVID-19 pandemic, the VRF has issued a statement regarding vitiligo patients infected with SARS-CoV-2 to assist healthcare providers around the globe in better managing these cases.
Recent study outcomes proved that COVID-19 hospitalization and mortality risk are significantly decreased among patients with vitiligo.
COVID-19 has intensified the implementation of telemedicine in the management of vitiligo. New technology opened the possibility of a low-threshold dermatological consultation with skin experts to initiate prompt treatment. However, different views on the telemedicine value in the treatment of vitiligo have been reported by both sides: dermatologists and patients.
We have started to formulate the opportunities and limitations of telemedicine in the diagnosis and treatment of vitiligo. The VRF’s working group established that management of vitiligo through teledermatology is feasible with few exceptions. Our experts have identified treatments that can be initiated and maintained by teledermatology, and ones that would still require visits to the clinic. With this knowledge, we can formulate the best practices and determine how the VRF can support dermatologists in their work. The analysis is complete, and a manuscript is currently in development.
World Vitiligo Day
On June 25th, the 12th edition of World Vitiligo Day was commemorated, with Mexico as the host country and the slogan "Learning to live with Vitiligo." This year the objective went beyond raising awareness, given that a greater impact was sought in education for the patient and the treating physician. We’ve held a press conference at the National Congress of Mexico, with live broadcast on national TV and online. Special thanks to team lead by Dr. Jorge Ocampo Candiani, head of the Department of Dermatology, Faculty of Medicine and University Hospital of the Autonomous University of Nuevo Leon and Dr. Rossana Llergo Valdez, president of the Mexican Foundation for Dermatology, for the flawless and impactful event organzation.
At VRF, our work is greatly supported by the contributions of our community members. In 2022, we were excited to see our community numbers grow and diversify:
- Instagram go over 12K followers,
- Newsletter stay at 25K subscribers, and
- Website float at around 135K unique visitors year after year.
Since 2010, VRF's website has provided more than 1,5 million people with disease information and clinical resources to improve the care of vitiligo patients worldwide. Over 30 new resources for vitiligo professionals were added to the website last year alone. Our free World Vitiligo Map contains an extensive directory of 335 vitiligo care specialists in every corner of the world.
Nineteen VRF Scientific Board Members and eight Patient Advisory Board Members, collectively from 20 countries, lend their expertise to our projects that advance the understanding of vitiligo, improve patient care and support the next generation of community leaders.
Education is a key part of pushing knowledge forward. Our educational activities include a variety of projects and partnerships, including the World Vitiligo Map, Vitiligo Patient Journey Map, COVID-19 statements and resources, telemedicine, global physician outreach and other activities, like:
- poster and paper “Exploring the natural and treatment history of vitiligo: Findings from the global VALIANT study” presented at six major dermatology conferences (e.g.)
- poster and paper “Mental Health and Psychosocial Burden Among Patients With Skin of Color Living With Vitiligo” presented at two major conferences and congresses (e.g.)
- paper “Using methotrexate in the treatment of advanced vitiligo” published in Journal of Cosmetic Dermatology.
Our Vitiligo Library project has provided books on vitiligo to NYC Administration for Children’s Services, as well as to our long-time project collaborator VITFriends from Boston, MA.
We have partnered with the publishing house of the World Health Academy Of Dermatology from Switzerland to make our materials accessible through universities and libraries across the European Union in 2023.
And our favorite project to work on last year was Vitiligo Patient Journey Map, with a short explanatory video coming later this month.
We rely more than ever on our digital communication channels to connect a global network of dermatologists and vitiligo enthusiasts. Last year, VRF has worked with media organizations across the globe, such as HCP Live and Karger Publishers, to educate physicians on the topic of vitiligo.
In the wake of World Vitiligo Day 2022 and 2023 preparations, VRF partnered with the creative agency the Great Britain KTC Digital Innovation in Mexico to better understand the primary audience, needs, and challenges of the global campaign, create new logo and re-design the website. Our collaboration project with Sane Seven - two outstanding photographers from United Kingdom, New York and London Photography Prize Winner 2021/2022 - was wildly successful on social media.
These developments allow us to better connect with our community worldwide and provide personalized care for individuals with vitiligo.
Looking Forward to 2023
In 2023, the VRF will continue to focus on improving vitiligo care through educational activities. Our Master Class on Vitiligo and Pigmentary Disorders is back on track with its 29th event scheduled this spring. We are working on expanding our awareness programs with vitiligo support groups in USA, South America and Central Asia.
We look forward to digging into our strengths and opportunities for growth — and with your help, we can make our strategic vision for the VRF a reality.
Our sincerest thanks to everyone who make our work possible and dedicate their time and energy to improving vitiligo care locally and globally!
Happy New Year 2023!
- Polypodium leucotomos as an adjunct treatment for vitiligo?
Extracts of the tropical fern Polypodium leucotomos appear to have beneficial properties for the vitiligious skin. Polypodium leucotomos (also classified as Polypodium aureum) a...
- PTSD in Vitiligo?
Vitiligo has long been associated with disease-related discrimination, social stigma, self-isolation, lower self-esteem, embarrassment, anxiety, and depression. These chronic ...
- Is it Bitiligo? Vitaligo? Veteligo?
There are so many different ways that people try and spell or even pronounce Vitiligo. Here are some common mis-spellings: bitiligo, vitigo, vitaligo, vitilago, vitiglio, vita...
Our work is entirely funded by private donations – we receive no money from government. Your money will help us continue funding research into vitiligo and supporting people affected by the condition.
Though it is not always easy to treat vitiligo, there is much to be gained by clearly understanding the diagnosis, the future implications, treatment options and their outcomes.
Many people deal with vitiligo while remaining in the public eye, maintaining a positive outlook, and having a successful career.Copyright (C) Bodolóczki Júlia
By taking a little time to fill in the anonymous questionnaire, you can help researchers better understand and fight vitiligo.