Vitiligo charities and organisations

Last Updated on 10th January 2026 by Caroline Haye

A history of achievement, and hope for the future

Vitiligo charities today are a godsend to millions of people around the world. But it wasn’t always that way. Growing up with vitiligo in the 1960s and ‘70s, I felt like I was the only person on the planet with this inexplicable disease. I alone had the curse of white patches on my skin and random white eyelashes. No one else woke up each morning wondering what part of them would mysteriously turn white next. There wasn’t another soul who was as as alienated and terrorised as me by such a sinister affliction. In those days I would have given anything to meet another human being who would understand what it felt like… Anyone who would even know, or care, what vitiligo was.

I had only ever met one individual who was remotely familiar with the word “vitiligo”. And that was our family doctor. Having said that, he knew next to nothing about it. And it seemed to me that he was as unconcerned about a 7 year old with vitiligo as he would have been about a grazed knee. There were no vitiligo specialists. There was no suggestion of a referral to a consultant or therapist of any sort. And no literature or further information on the subject to be found.

What I needed (and all the other vitiligo sufferers out there, who presumably felt equally alone and confused) was support. But there was none. So I navigated the rest of my childhood and early adulthood as best I could, hiding my condition from everyone… Still feeling as if I was carrying some kind of guilty secret with me through my life, never knowing if it would keep spreading or how I would cope if it did.

1985

It was not until the mid 1980s that I became aware of a ground breaking new London-based organisation called The Vitiligo Society. The only charity of its kind at the time, it was established to provide support and information to those directly, and indirectly, affected by vitiligo. And it has gone on to help fund research and raise awareness both nationally and globally ever since. In doing this, it has set an example for more local and international vitiligo charities to follow in its wake over the intervening years.

1995

The American Vitiligo Research Foundation (AVRF) set up a decade after its UK counterpart. It was the creation of one individual, Stella Pavlides, who runs the organisation from her Florida home. And it focusses on public awareness and community support in particular relation to children with vitiligo.

2004

Vitiligo Support International (VSI) was the next vitiligo organisation to emerge, providing patient advocacy, education and vitiligo resources. Its stated commitment is to “supporting those affected by vitiligo, raising awareness, promoting research, and discussing effective treatments until a cure is found”.

2007

Next on the scene was another US non-profit organisation, VStrong Vitiligo Support Community. Founded by TV personality and vitiligo advocate Lee Thomas and eminent dermatologist Dr Henry Lim, it is dedicated to education, public awareness and mental support. And its vision statement is “A world free from the stigma associated with vitiligo”.

2010

The Vitiligo Research Foundation (VRF, as distinct from AVRF) was the next US non profit organisation to join the growing list. Its focus is to find a cure through funding and facilitating medical research globally. The foundation works to bridge the gap between scientific discovery and patient care, with the ultimate goal of finding a cure for vitiligo.

2011 – 2016

As distinct from VRF and AVRF, the US-based Global Vitiligo Foundation (GVF) was originally the Vitiligo Working Group, a committee of the Skin of Color Society (SOCS). It was officially established in 2011 by Henry Ford Hospital physicians, Drs Henry W. Lim and Iltefat Hamzavi, and subsequently incorporated in 2016. Its stated mission is “To improve the quality of life for individuals with vitiligo through education, research, clinical care, and community support”. As part of its support work, GVF launched a virtual vitiligo support community called UNITE in 2024.

2016

Vitiligo Support UK began as a patient support group and was later registered as a charity in 2016. And, whilst it is small in terms of funding, it also provides extensive advocacy, support and information to people with vitiligo in the UK.

2020

One of the more recently founded charities is Cure Vitiligo. Like all the other organisations above, it seeks to raise awareness, support people with the condition and raise funds for research. But its fundraising efforts are more targeted, in that all donations go directly to the research work of Dr. John Harris at the University of Massachusetts Chan Medical School. The founder, Liana Marks, sums up her vision this way… “to not only find a cure but also to create a world where those living with vitiligo can freely choose their path—whether that means pursuing treatment or proudly embracing their individuality”.

A global organisation

VPOC (Vitiligo International Patient Organisations Committee) is a global alliance of vitiligo patient organisations. It came about in 2018 at the first Vitiligo International Patient Organisations Conference as a way of bringing together multiple patient organisations from over 30 countries to help improve vitiligo treatments, awareness and quality of life. It is now an official NGO based in Paris.

Europe

In Europe the vitiligo community can also access support from their own national organisations. For example, the Association Française du Vitiligo in France, the Deutscher Vitiligo-Bund in Germany, Vitiligo.nl in the Netherlands and the Association Belge du Vitiligo in Belgium, to name a few.

Other countries

Key vitiligo organisations in Africa include the Vitiligo Support and Awareness Foundation (VITSAF), dedicated to the rights and well-being of individuals with vitiligo, mainly in Nigeria and sub-Saharan Africa… Vitiligo Group Kenya (VGKe) and the Vitiligo Society of Kenya (VISOKE), both working to raise awareness, address the issue of stigma, and provide support to Kenyans affected by vitiligo, the Vitiligo Association of Uganda… and the Vitiligo Society of South Africa.

Among the charities and non profits providing vitiligo support in Asian countries are SupportVitiligo (India), the Vitiligo Foundation of India and Vitiligo Support Group Singapore.  

The Vitiligo Association of Australia (VAA) is a registered charity that provides education, runs fundraising events to support research grants, and helps form local support groups in various Australian states, including New South Wales, Queensland, Victoria, South Australia, and Western Australia.

Too many vitiligo support organisations to mention

To my knowledge, none of the charities and non-profit organisations mentioned above (and there are many more) existed prior to the 1980s. They are all are the result of individuals or groups of people deciding to take meaningful action to improve the lives of people living with vitiligo. They are doing this by creating awareness, raising funds for research and support, providing information and education, connecting people and groups with one another and fighting the significant social stigma associated with vitiligo in many communities. The practical and emotional support they provide around the world is incalculable.

What vitiligo organisations have achieved… and will achieve

What these organisations, and the dedicated people who contribute to them (many on a purely voluntary basis), have achieved so far is monumental. Without them, I have no doubt that we would still be living in a world where the word “vitiligo”, and the condition it describes, would be virtually unknown. The majority of sufferers (and I believe this would be the appropriate word) would hide their skin from public view. They would feel alone and hopeless. And their doctors would most likely tell them there was no treatment and that they should simply put up with it. In some communities they would even be feared and shunned.

Happily, this state of affairs has changed dramatically and will continue to improve, thanks to the tireless and passionate efforts of an army of unsung heroes. And if you want to get a feel for how many people contribute their time and effort to the vitiligo cause around the world, take a look at the number of organisations listed on VIPOC’s website. You will see that I have only included a selection in this post. There are many more in existence, and no doubt many more to come… Each one helping to improve the quality of life of everyone affected by vitiligo and to make more effective treatment options a reality.

You may also like to visit my earlier post: Vitiligo Advocates and Champions