Vitiligo - My Story Booklet published.


Last year, The Vitiligo Society collaborated with Birmingham Children’s Hospital on a children’s booklet series entitled ‘Vitiligo – My Story’.

Part of an ongoing series that brings focus to a number of conditions both children and adults suffer with, the ‘Vitiligo – My Story booklet was a great way to bring together the stories of regular children who openly shared both the positive side and sometimes negative side of having Vitiligo.

After months of constructing a great selection stories in the form of interviews, we are pleased to announce the booklet is now ready to download. Please find a copy for your viewing here.



Calling all Hi-light Vitiligo Trial participants!

Thank you to all members of the Vitiligo Society who have participated in the HI-Light Vitiligo Trial.

Many of you will have finished using the light device and ointment for the trial. However, some of you will still be using the treatments. If you are still in the first 9 months of the study then it is vitally important that you keep in touch with your research nurse, even if you have stopped using one or both of the treatments for any reason. This is particularly important for the final 9 month visit. This is the most crucial time point for the trial; even if you have not been using the treatments, please take the time to see your nurse or talk to them over the phone. This is the visit at which you will get to compare your vitiligo with photographs taken at your first visit.

Please remember:

  • Vitiligo tends to respond very slowly to any treatment; do not be discouraged if there does not seem to be a response to treatment initially, and please continue with treatment as planned.
  • The treatments can take some time to administer and we understand you may be too busy to use one or both treatments. If this is the case, it doesn’t mean that you should withdraw from the trial. On the contrary, data collected from participants no longer able to treat is just important as those still treating.
  • If necessary it is OK to stop using one or both of the treatments for a period, and then start using them again at a later stage, so long as this is recorded in your treatment diary. The overall aim is simply to use the treatments as much as possible. Please do not feel like you cannot tell the study team if you have stopped using the trial treatments – it is really important to stay in touch!

If you have had your 9 month visit with the nurse, please look out for the follow-up questionnaires that we will be sending you every 3 months for a year. These will either be sent via email or post. If you have not received any questionnaires or any of your contact details have changed please do not hesitate to get in touch with the Hi-light Vitiligo Trial team email This email address is being protected from spambots. You need JavaScript enabled to view it. or tel 0115 823 1586.

Thank you for your continued support and participation in the trial.




Up until recently, Vitiligo has often been regarded as a misunderstood 
condition, with many questions around treatment, management and what to do 
after diagnosis, remaining a ‘grey’ area. The No-Nonsense Guide To 
Vitiligo is what’s needed within Dermatology and by those who have Vitiligo.  

This guide is for those of you who have been looking for a better way to 
manage Vitiligo. In this smart and accessible book, Yan Valle – author, 
tireless campaigner and CEO of Vitiligo Research Foundation – cuts through 
the myths and misinformation that surround Vitiligo to tell you what you really need to know.   

A No-Nonsense Guide To Vitiligo is based on Yan’s years of research and practical experience. It contains the hidden truth about Vitiligo and its connection with other diseases, common household items, daily stress and environmental factors. 

Yan shares proven techniques you can use to detect the early signs of Vitiligo, identify potential triggers, be confident about available treatment options, their efficacy and possible side-effects. A thoroughly researched, easy-to-read and jargon-free guide to Vitiligo – this is essential reading for Vitiligo patients, or anyone interested or has a close connection with the condition. 

Now available in ebook and print formats through Amazon, iBooks, and Smashwords:

About Yan Valle;
Yan Valle is a writer, vitiligo spokesperson and strategist. He has written extensively on skin research and care, including numerous peer-reviewed publications, benchmark studies, and reports. He has also been a keynote speaker at many dermatological conferences. 

As a patient of Vitiligo since around six years of age, Yan has gone through every common pitfall known to a person diagnosed with vitiligo: misdiagnosis, years of non-treatment followed by bursts of mistreatment, self-prescription and self-medication, to name a few. 

As a professional, Yan went from nearly three decades in the high-tech and business development sector to become Chief Executive Officer of the non-profit Vitiligo Research Foundation, based in New York, USA.

Now Yan is actively involved in improving quality of life for those affected by this neglected disease at VR Foundation and the United Nations.  A frequent lecturer, Yan also serves as an visiting professor at the University of Guglielmo Marconi in Rome, Italy.


A magnificent seven. Volunteers needed!



The Vitiligo Society is looking to broaden its experience in a number of areas as part of its modernisation programme. To this end, seven new director based roles have been created to sit alongside the current Board of Directors.


What is involved?

These roles are on a volunteer basis and expected to take up no more than 4 hours per month. These roles can be located anywhere in the UK, but are expected to be able to travel to London around twice per year. Most board meetings will be done via conference calls. In all cases the roles require a bias towards digital/ web based initiatives. All roles are Director roles, and will form part of the Board of Directors, with full voting rights.


Make a difference

Directors are expected to either have Vitiligo or have a close personal connection with Vitiligo. The Society is at a crucial period of inflection as it looks to become fit for the digital age and there is huge opportunity to make a difference not only in improving how the Society operates but also improving the lives of thousands of people with Vitiligo.


How to apply

Seven roles are outlined below. Should you be interested in applying, please send your CV to This email address is being protected from spambots. You need JavaScript enabled to view it.. The deadline for submissions is 28th February 2018. This will be followed by a brief telephone conversation with one of the current Directors followed by an invitation to join a Board meeting in an advisory capacity. Final confirmation of roles will occur by 31st March 2018.


The roles in more detail

The seven roles are described in more detail below.


1. Director - IT Systems & Operations

  • Focus: the Society's current systems including website, communications, databases, document creation and storage.
  • Expectations: to advise on optimal cost effective systems solutions for the Society to reflect its appetite to lead with a digital first strategy.
  • Desirable skills: experience in improving or introducing new systems and software in order to improve operations. Experience of creating / managing websites and web content.  



2. Director - Accounting & Controls

  • Focus: the monthly book-keeping for the Society
  • Expectations: to advise on most appropriate accounting system for the society to reflect its move to a simpler operating model
  • Essential skills: an accounting/book-keeping qualification or QBE 



3. Director - Commercial & Fund-raising

  • Focus: identifying and pursuing sources of revenue for the Society.
  • Expectations: working closely with trustees to shape promotional, marketing or educational campaigns and identifying associated revenue opportunities either through grants, commercial ties, merchandising or direct appeals.
  • Desirable skills: experience within a sales or marketing environment. Experience of creating / managing websites and web content. 


4. Director - Clinical

  • Focus: bring a medical / research based perspective to The Society's operations.
  • Expectations: to be the main point of contact for all medical interactions between The Society and other parties. Responding to medical queries, interacting with other clinicians, ensuring all communications are correct form a medical perspective. Ensuring The Society and its trustees are up to date with regards to latest research.
  • Essential skills: a medical professional with a track record of working with Vitiligo.


5. Director - Children & Education

  • Focus: identifying and delivering educational initiatives on behalf of The Society to also include a focus on under 18's.
  • Expectations: Driving The Society's educational strategy within existing resource constraints. Leading all initiatives that involve improving members understanding of Vitiligo, making sure all initiatives are evaluated form an under 18's perspective.
  • Desirable skills: experience within the educational sector or working with youngsters who have Vitiligo or other similar conditions. Experience of creating / managing websites and web content.


6. Director - HR

  • Focus: all HR issues relating to the employment of staff, volunteers and Directors.
  • Expectations: subject matter expert on all HR matters. Will advise on the process of moving to a volunteer only basis mode of operations.
  • Essential skills: must be a HR professional with direct experience of redundancy processes and procedures. 


7. Director - Legal

  • Focus: all legal matters relating to the operations of The Society and its articles of association.
  • Expectations: advise on legal issues including the AGM, interactions with Companies House, Charities Commission and employment law.
  • Essential skills: qualified legal practitioner with experience of company law.



Parents' Support Group

If your child has Vitiligo you may like to join our Parents' support group.  It meets regularly throughout the year at the Society's London office.  The group aims to provide support and help for parents.  It's an informal setting where you can find out more about the condition and the work of the Society.

If you're interested, please contact the Society:

Telephone: 0800 018 2631(free from UK landlines and UK mobile phones)

Tuesday to Thursday 10:30am to 2:30pm

email: This email address is being protected from spambots. You need JavaScript enabled to view it.


New Article on Vitiligo Published in The Lancet

A new article on vitiligo  has been published  (January 2015) in the Lancet on the topic of vitiligo under the authorship of Khaled Ezzedine, Viktoria Eleftheriadou, Maxine Whitton, Nanja van Geel.   It presents some new insights into the incidence and treatment of vitiligo.  Recommended reading.

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Skin PATCH Survey Results


The survey of products for camouflaging hands has been a joint venture undertaken by the Vitiligo Society and the British Association of Skin Camouflage.   The survey addresses the  problem that traditional camouflage washes off too easily for use on the hands. Volunteers tested 10 products over the course of 6 months during 2014. The products are all readily available in the UK, but not on prescription.   The following is the text of a presentation given by Liz Allen of the British Association of Skin Camouflage  (BASC) at the Vitiligo Society Open Day in November 2014.


Etin Skin Solution found to contain corticosteroid betamethasone

The Medicines and Healthcare products Regulatory Agency (MHRA) and the British Association of Dermatologists are today warning people NOT to purchase or use Etin Skin Solution, a lotion claiming to treat skin conditions and known to have been supplied from various Asian and African beauty shops.

Etin Skin Solution was brought to the attention of MHRA by a consultant at Birmingham Children’s Hospital who became concerned following a complaint by a patient. Investigations to identify the source of this product are being conducted.

Skin PATCH Survey

The Vitiligo Society, in collaboration with the British Association of Skin Camouflage (BASC) have organised a survey of products which might be useful for camouflaging hands.  We are calling this the PATCH survey (short for Products Applicable to Camouflaging Hands).