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It’s International Literacy Day!

Happy International Literacy Day! A globally recognised day created by UNESCO as a global reminder of the importance of literacy in all countries and cultures.

Reading and developing our literacy skills is something many of us do with ease. Immersing ourselves in a good book that allows us to enter a zone that takes our imagination elsewhere as we sink into the depths of a good plot that provides us with a moment of escapism, or allows us to simply learn something new about the world. Just thinking about the many fiction, non-fiction and self-help books on my own book shelf, is a reminder of the many moment’s I’ve enjoyed in quiet spaces, reading something of interest and value.

Unfortunately for some, reading doesn’t come easy because of a lack of resources in their location, in fact, according to the United Nations 773 million adults and young people lack basic literacy skills whilst 617 million children and adolescents are not achieving minimum proficiency levels in reading and mathematics (source: www.un.org ). Despite this shocking fact, reading is a necessary skill because not only does it empower us, but it’s also a vital part of life long learning and is an integral skill that we need in order to navigate through daily life.  

Every bookshelf, whether it be at school, home or your local library should include a diverse collection of books that gives everyone the freedom to learn and improve their reading and literacy skills, and so in this post, I wanted to share some great titles that have recently emerged which are closely linked to vitiligo and are worth a read.

We’re Going To Find The Monster by Malorie Blackman / illustrated by Dapo Adeola

It feels like the right time to share this beautifully illustrated children’s book which was released on the 2nd September and features an exciting character with vitiligo. Written by legendary young adults author, Malorie Blackman and illustrated by Dapo Adeola, ‘We’re going to find the monster’ follows Charlie and Eddie as they go on an extended adventure in search of a monster! Creatively written with plenty of fun and descriptive phrases, there is no mention that Charlie, the character with vitiligo, has the condition, which is truly significant because it creates a sense of normality without the desire to highlight the characters skin. Definitely a great step in the right direction!

Authentically Addie by Stephanie Wolfe / Illustrated by Noor Alshalabi

Authentically Addie tells the story of a little girl in a wheelchair who learns about disabilities and unique indifferences whilst on a trip to the zoo. In this ultra-inclusive story, author Stephanie Wolfe was inspired by her own daughter, Addie, who was born with a life changing disability.

Whilst on her journey, Addie is accompanied by her zookeeper friend, Kiara, who has vitiligo and together they discover what makes them different makes them unique.  Vibrantly designed with plenty of colour, Authentically Addie became a number 1 bestseller on Amazon and is definitely a story worth adding to your child’s book collection.

All Bodies Are Cool by Tyler Feder

All Bodies Are Cool is a modern, body positive visual book that celebrates the beauty and uniqueness of all bodies. The focus is heavily on the illustrations which comprises of bodies of all sizes, types, shapes and colours and yes, it even features the body of a girl with vitiligo! The language tone is very warm and welcoming with a touch of humour and plenty of honesty about why your body is wonderful as it is. An inspiring book written with zero judgement, featuring empowering illustrations and plenty of self-love that encourages us all to welcome.

You Are Enough by Margaret O’Hair / Illustrated by Sofia Sanchez

Another great visual book designed as a reminder to simply ‘be yourself’. This brightly illustrated story follows Sofia Sanchez, a 12-year-old model with Downs Syndrome as she connects with children from all backgrounds and abilities, including another character with vitiligo! Celebratory and positive, ‘You Are Enough’ is definitely one that highlights the importance of being proud of who you are. Currently available to pre-order on Amazon.

Strong In The Skin I’m In by Joti Gata-Aura

Moving beyond the wonderful world of children’s books, next up is Strong In The Skin I’m In by Joti Gata-Aura. This moving story, which is Joti’s first novel, explores the many themes often associated with vitiligo such as diagnosis; treatment options, developing self love and navigating through a world where there is such a strong emphasis on the way you look. If you love books based on personal experience, then this is a must read for you.

A No Nonsense Guide to Vitiligo by Yan Valle

A No Nonsense Guide to Vitiligo will always be very relevant when it comes to exploring vitiligo because it is exactly that; a guide to all things vitiligo which investigates topics such as symptoms, common triggers, diet, treatment, medical jargon and a long list of other topics that are prevalent amongst the community. Author, Yan Valle is a notable figure globally, who not only has vitiligo and speaks from experience, but is also the CEO of the Vitiligo Research Foundation and has been committed to vitiligo research and improving the quality of life of those living with the condition for many years.

How To Disappear Completely by Ali Standish

This endearing read falls within the young readers category and shares the story of 12-year-old Emma who experiences immense grief after her grandmother passes away, whom she was incredibly close to. After the loss, Emma discovers strange white spots on her skin which is later diagnosed as vitiligo and leads to her feeling isolated at school and on the receiving end of taunts and bullies. However, beyond the despair, there are plenty of magical moments relating to her love of journaling. And in this story, one of her journaling moments leads to a response by a mystery writer which significantly changes her life. A great story for secondary school readers.

All books mentioned are available to purchase on Amazon.

The Vitiligo Society launches official merchandise and introduces a new online shop

The Vitiligo Society are delighted to announce the launch of their new online shop selling a range of branded merchandise for those with vitiligo.

The shop, which has been a key focus since January this year, has been one of our critical objectives for the Society and forms part of our strategy to raise awareness and represent the global community.

The range, which is personally and exclusively branded, is the first of its type for the Society. Each item was carefully selected and crafted with the community in mind as we wanted everyone with vitiligo to feel empowered, represented and proud of who they are.

Having done extensive research, we created women’s branded t-shirts with slogans including ‘it’s called Vitiligo’ and ‘Vitiligo Queen ‘ and also fun children’s t-shirts with equally strong slogans such ‘Vitiligo Superhero’ and ‘Vitiligo Warrior’. Beyond the clothing line, also available is mugs, water bottles, homeware items and beach towels.

Charity Director, Abbie Hurrell who has been at the forefront of creating the online shop, commented that “Our volunteer team has been working really hard over the last 6 months, learning how to set up and run our new online shop.

As well as raising some extra funds for the Society, we hope that the shop products will help people feel more confident in their skin. We’ve listened to our community and we’ve tried to create products that we know will help them in the kinds of situations which they might find more challenging – such as our new beach towel range and our ‘it’s called vitiligo’ slogan.

We also know how important it is to continue spreading awareness about vitiligo. By giving our community the opportunity to ‘Wear the Mission’ everyone can be a part of this work, and together we can help reduce some of the social stigma around visible skin conditions. We really hope the collections are loved by our community’.

In addition to Abbie, the Society was heavily supported by volunteer Emily Murfin who brought together our ambassadors and played a pivotal role in the launch. Emily commented that “I have been helping the Vitiligo Society launch their new shop! It has been the most amazing, positive and inspiring process to have been a part of. We now have the most amazing team of Brand Ambassadors contributing to the project and modelling the range. Vitiligo affects everyone in such different ways, some may choose to hide it, others may embrace it. With the range we have, we hope those with vitiligo will find something which reflects there personality and vitiligo. Be proud to be part of the 1%. It has personally taken me many years to come to terms with my own diagnosis and this journey has helped considerably.. Everyone is loving the clothes and I hope you do too”

In order to bring the clothing range to life, we reached out to members in the community who were willing to support by modelling items from the range. Ambassador, Alec King, commented that “all the merchandise looks incredible and I love the eco-friendly packaging”, whilst Diane Bustos shared that “the clothes are amazing! I love the saturation of the colours and how soft they feel. I also think you picked the perfect quotes for the items and I can see the “Warrior” and “Princess” titles make her feel happy and proud. I usually struggle to get her to try on clothes but she loves these!! She and I are a little picky too because our skin is sensitive and these are great and the colours are lovely!”

We are personally very proud that we have created this new range and really feel as though this will be a big win amongst the community.

All prices include a 15% – 40% donation to support those with vitiligo. All members can take advantage of a 10% discount on all purchases until 30th September 2021. You can make a purchase here: https://shop.vitiligosociety.org/

…and if you do nab yourself something nice, please do feel free to send us some photos of yourself with your Society merchandise.

If you would like to become a member and support the Society and the work we do, please click on the following link to sign up: Membership – The Vitiligo Society

4 ways you can build confidence in children with vitiligo

Vitiligo doesn’t just impact the individual with the condition; it can impact those closest to them such as parents, carers and family members.

Raising a child with vitiligo is likely to be one of the toughest jobs you’ll find yourself having to face and during the early stages of diagnosis, it is possible that you’ll be feeling confused, anxious and concerned as you start to understand what having a visible difference could mean for your child.

It is likely that you’ll have several questions you’ll be seeking answers to; how do I support my child during difficult times? Will they be ostracised because they look different to the other children in their school? Will their skin get any worse than it already is?

Teaching children to be confident is a tough job for any parent and so for parents of children with vitiligo, it may feel like your job is even tougher….but instilling them with confidence is definitely possible. I’m a firm believer that education starts in the home and with the right guidance and support, you can raise your child to feel comfortable in their skin and teach them how to navigate through school and manage potentially difficult situations that may arise. Of course, as parents you can’t be by their side during every moment, but you can equip them and teach them to be confident which can have a lasting effect on who they are.

So lets take a look at what you can do to support them! Here are my tops tips on how you can help your child to feel confident in their unique skin:

Explain what vitiligo is and keep it simple

Vitiligo is a complex condition because for some it could mean they have another autoimmune condition. There is also the psychological impact of vitiligo in addition to the physical. I would always say in the first instance, when explaining to your child what vitiligo is, keep it simple and try to be upbeat. Young children are likely to ask you what it is (this could be because they are curious about their own skin or because someone has asked them), so be ready with an answer when the question arises.

Describing in a simple way in which they can understand means explaining that they have white patches on their skin and that it isn’t something for them to worry about because it doesn’t hurt, it just simply makes them look different. They are capable of doing all the things their friends can do; it’s just a physical difference.

I know some parents have gone one step further and creatively explained that they have super powers because of their patches! It’s a great way to take away the serious element whilst making things more light hearted, and besides that, which child doesn’t like the idea of having there very own super power!

At a later stage, when they are older and want to understand the more complex side of the condition, then you can explain that it’s an autoimmune condition where white patches form on the skin due to a lack of melanin, but until that point keep it simple.

Show them the difference vitiligo is making

Given the platform vitiligo has been given in recent years and how social media has brought together an incredible community, showing them what they are part of will automatically make them feel included. Being part of a community hasn’t always been possible, so now that we have come together collectively to support each other and openly offer advice, it should make living with the condition that little bit easier. Aside from connecting with others, show them books that now feature characters with vitiligo so they can see they are represented in the stories they love, show them that there is a Barbie Doll that has patches like they do and show them who the positive influencers are who are sharing their stories and paving the way for the younger generation in terms of education. Children with vitiligo need to see they are being represented and by doing this it helps to normalise the condition.

If you’re positive, they’re positive

As parents you are likely to be the ones that your child looks up to and will come to during low moments and high moments. It is completely acceptable for you as parents to worry about how your child may be affected in later life, after all they are innocent and you will naturally be trying to envision there future with the condition. This may sound hard, but not passing your worries and concerns onto your child is so important. Children are very receptive to how you might be feeling and if they tune into your worry, it’s a feeling they can instantly pick up on.

My parents were very concerned about my skin when I was growing up. I understood because of the endless hospital appointments I attended as we discussed all the options that we hoped would slow the patches down. But, the one thing I can say is, I never picked up on their personal worry. They were always upbeat, telling me that I was beautiful and never heavily focused on discussing it.  From the age of 3 up until I was 11, vitiligo for me wasn’t an issue because it wasn’t a ‘hot topic’ and I wasn’t aware I was different.

It’s important that, if you are worried, that you try to get the support you need from a medical professional or support groups so that you can discuss your concerns, because the chances are, there are plenty of other parents feeling exactly the same way you do and you are there to support each other. It’s important that you remain positive for your child so that they don’t feel concerned too.

Encourage them not to hide their patches

To avoid the potential stares and inquisitive questions, some parents may prefer to cover their child’s skin because they worry about how people will respond. This is completely natural, however, if you encourage your child to wear shorts in the summer and allow them to wear swimsuits by the pool, this will show them that they don’t have anything to hide. As a child, I have so many photos of me with my legs and arms out for other kids to see my patches and as much as my skin looks very noticeable, I love that my parents set that foundation during my early years, encouraging me to become a confident child. People will unfortunately stare because they are curious, but it’s better to accept that this might happen rather than feeling as though you need to hide your child away in order to avoid it. Your child has just as much right to enjoy the summer months like all other kids so encourage them to feel free and to share who they are with vitiligo!

Follow Natalie’s own personal journey with vitiligo on Instagram @being_just_us

News

Announcing a new Chairperson for The Vitiligo Society

To all Society members, volunteers and supporters,

I am writing to you today to share some news of changes within the leadership of The Vitiligo Society.

It is with a heavy heart that I notify you that I stood down as Society Chairperson and Trustee at our most recent charity Board meeting. I have dedicated the last 5 years of my life to executing on a vision for the Society that fully realises its potential, with a razor sharp focus on positively impacting the lives of so many living with vitiligo, and their families. I am extremely proud of the radical transformation that has been achieved, and so thankful to the Trustees, staff and volunteers that worked tirelessly to make the vision a reality. As a small charity, the changes we enacted meant that despite the turmoil of the last 2 years caused by the pandemic, we have not only survived, but begun to thrive.

My decision to stand down was not easy, but I feel now is the right time to move on to pastures new. The foundations have been laid, and we continue to increase and diversify our income streams so we can invest in new vitiligo projects, programmes and support initiatives. We have had a material increase in volunteers, and a Board of Trustees of highly skilled and empathetic individuals that continues to grow.

As for my successor, I’m truly delighted to announce that John Dunster was unanimously voted in by the Board as the new Chairperson of The Vitiligo Society. John is a passionate advocate for making life better for those living with vitiligo, and I couldn’t be happier to be handing over the reins to him. John has had vitiligo for over 15 years and became a Trustee in June 2019. He has brought a wealth of experience from the corporate world to our charity and played a key role in the modernisation of the Society since he came onboard. You can reach out to him at john.dunster@vitiligosociety.org. John assumes the Chair role immediately and you’ll be hearing more from him very soon.

I also leave you in the extraordinarily capable hands of our growing board of volunteer Trustees and Charity Director, Abbie Hurrell. Abbie has been instrumental in realising the aforementioned vision for the Society and driving our mission forward. She has galvanised the Society since joining in January of this year, and I am so excited to watch the charity go from strength to strength as I step back from my leadership role. You can get in touch with Abbie directly at abigail.hurrell@vitiligosociety.org.

I’d like to thank you all for continuing to support the Society, it’s been a pleasure to serve all of our supporters and members. Although no longer Chairperson, I shall remain your peer as a member of the Society and look forward to interacting with you on our online platforms and at future events.


With all my best wishes,

Participants required to test the wording of a clinical questionnaire

POW Translations are working on behalf of RWS Life Sciences, to recruit and interview 5 patients with vitiligo to test the wording of a questionnaire which will subsequently be used as part of clinical trials in the UK.

Who are POW Translations?

POW Translations Inc. is a Canadian translation company that specialises in linguistic validation, clinician recruiting and cognitive debriefing in the life sciences field, for this questionnaire they are working with a UK based consultant.

Who is eligible?

They are seeking 5 patients with Vitiligo (2 patients 12-17 years old + 3 patients 18-75 years old). Under 18s should have the consent and supervision of their parent or carer.

What will the study involve?

Participation will take the form of a telephone interview (approximately 1 hour in length) and any information gathered is limited to feedback as to whether (or not) the questions posed are well understood by the participants.

These questionnaires will subsequently be used as part of clinical trials in the UK. No personal information will be gathered other than basic contact information. Participants will be compensated £75 for their time.

How to get involved:

For further information or to register your interest in participation, please contact glynis.brydon@gmail.com.

Vitiligo Research Foundation share UK results of their Quality of Life study

In June 2021 our friends at the Vitiligo Research Foundation launched their Quality of Life study. This study was designed to help researchers understand the impact of the disease. The idea was to compare the results to a similar study the Foundation ran in 2018. Run on a global scale the Vitiligo Society partnered with the Foundation to deliver the study in the UK.

View the full research results from the Foundation

The study in more detail

Vitiligo affects all ages, sexes and social groups and approximately 1-2% of the world population. It is typically characterised by smooth white patches in the midst or normally pigmented skin, which gradually expand over time. Besides skin manifestation, symptoms such as depression, anxiety and sleep disorders are very common in people affected by such conditions. Although primarily viewed as a benign skin condition, vitiligo has severe socioeconomic effects, which have a substantial impact on many aspects of physical, emotional, and mental well-being.

This was an online survey designed to compare Quality of Life measure of patients with vitiligo in different countries within the same timeframe that could potentially relate to region-specific burden of the disease. Of the Vitiligo Society the study has been useful in understanding the change in impact of vitiligo for UK participants over the last 3 years.

The study ran from the 30th May 2021 – 30th June 2021.

What were some of the key findings? 79% of participants reported feeling self conscious or embarrassed about their skin in the past week64% of participants reported that their skin influenced the clothes they choose to wear30% of participants reported that their skin has been a problem at work or whilst studying29% of participants felt treatment caused problems by making their home messy or taking up time20% of participants felt their skin created problems with their loved ones or friendsGenerally participants in 2021 displayed an improved quality of life compared to participants in 2018, however it’s clear vitiligo still impacted the lives of the majority of participants. How do studies like this help our Society?

The Vitiligo Society can use these results to demonstrate the need for greater awareness of the condition and more effective treatments. Results like this influence our strategy and how we allocate our resources, they also help strengthen our conversations with partners and demonstrate how important the work we do is.

Participants required for Global Vitiligo Foundation study into alternative treatments for vitiligo

The Global Vitiligo Foundation are working on a project to better understand the use of alternative treatment use in people who have vitiligo, and their views on using over-the-counter treatments.

Who are the Global Vitiligo Foundation?

The Global Vitiligo Foundation are a US based organisation set up to improve the quality of life for individuals with vitiligo through education, research, clinical care, and community support.

Who is eligible?

Participants need to be over the age of 18 and have been diagnosed with vitiligo by a licensed medical professional.

What will the study involve?

The study will involve a 10 minute online survey. You may stop the survey at any time and answers will remain confidential.

This study has been approved by the Institutional Review Board.

How to get involved:

Link to survey: https://www.surveymonkey.com/r/MCZS3LK

If you have any questions, feel free to reach out to Dr. Richard Huggins at rhuggin1@hfhs.org.

Participants required for Cardiff University study into childhood skin conditions

Cardiff University are seeking participants to assist researchers by being interviewed about their experiences of support for the psychosocial issues connected with childhood skin conditions

Who is eligible?

Children aged between 8-11 years of age, diagnosed with a skin condition, and no other chronic health conditions.

Their adult parent(s)/primary caregiver(s) (18 years of age)

Two parents/carers are welcome to participate, although this is entirely flexible and up to the carers to decide which parent/carer (or two) takes part.

What will the study involve?

The study will involve the child and their primary carer(s) participating in a recorded online interview held over Zoom, lasting approximately 1 hour.

Participants will be asked about any support options they have been offered or undergone, what they would like to see change in relation to current psychological support, and what they might find helpful from future interventions.

This study has been granted ethical approval by Cardiff University School of Psychology Research Ethics Committee.

How to get involved:

If you would like more information about the study, or are interested in participating, please email Olivia Hughes hughesoa@cardiff.ac.uk.

New vitiligo Peer Support Group launched

The Vitiligo Society are embarking upon a series of initiatives to provide accessible and active support to its community members. We recognise what a challenging and perhaps lonely journey Vitiligo can be, and how important a space that enables individuals to connect with one another is. 

In order to facilitate this type of ‘space’, we have been exploring the idea of a regular support group, which from time to time, may also include expert talks by professionals. To test how this might work best for our members, we have decided to set up a pilot. This pilot “peer support group” will run over two virtual zoom dates:

Session 1 – 23rd August 2021: An open flow group where individuals will be free to talk about their Vitiligo experiences, and a chance for our community to meet and socialise 

Session 2 – 4th September 2021: – A specialised talk by Nutritionist Kai Rai, who will provide her own insight on nutrition specifically for Vitiligo. There will be some Q & A time afterwards

The above sessions will be open to anyone who has been impacted by Vitiligo in some way. Whether you have been living with this condition, in the middle of getting a diagnosis or a carer. The aim will be to foster a harmonious environment where individuals can meet, be positively supported, and leave feeling more uplifted. A chance to learn, share information, challenges and personal Vitiligo journeys with others.

Hanna Gor, the volunteer behind the new initiative, shared her motivation behind setting up the pilot events:

After going through an emotional and challenging time trying to obtain a diagnosis, it struck me how lonely the whole experience felt. There didn’t seem to be any groups available to turn to. A chance to ask questions, or perhaps attain a few words of encouragement from individuals who understood first-hand, would have helped ease the mental anguish I was feeling.

The idea of a Vitiligo support service started to develop – I could see there was a gap, and felt such a concept could act as a great tool to positively help others on their own journey. I decided to contact The Vitiligo Society and offered to volunteer with this proposal in mind. Together, we evolved the idea into a peer support group, and here we are with the pilot! I really hope this initiative turns out to be one people find useful, as I passionately believe in it!

We will be gathering and reviewing feedback from attendees at the end of the pilot – should it prove successful, the intention will be to set up a more permanent offering in the near future. 

If you feel an initiative like this is valuable – please support us and sign-up to this pilot, or offer to help our small volunteer team on other events. To get involved, or for any other questions, email us at: peersupport@vitiligosociety.org.uk 

Please note: the sessions will not be run by trained professionals (doctors/ psychologists), if you have a query that requires support from trained professionals, then email us at: hello@vitiligosociety.org.uk

The Vitiligo Society releases free Vitiligo eBook and Audiobook.

We know it can be overwhelming, frustrating and disheartening trying to find accurate and reliable information about vitiligo.

This is why The Vitiligo Society has worked hard over the past 18 months to collate all the most relevant and update information about vitiligo, and bring to together in one free resource for everyone to access and download.

We know everyone likes to access information differently, so we have bought this information together in both an eBook and an Audiobook for our community to read through, or listen to, at their leisure.

The best part is that we will continue to update our book, so it will always be accurate and backed by the latest research.

The Definitive Guide to Vitiligo eBook provides real-world information to educate yourself and others on:

What is vitiligo?

What vitiligo treatments are available?

What vitiligo support services exist?

Can nutrition and diet can affect vitiligo?

What camouflage options exist?

Click HERE to download your free copy of the The Definitive Guide to Vitiligo.

The Vitiligo Society announces second Parent Support Network meeting

We are excited to announce the second meeting of The Parent Support Network (PSN) – a support group dedicated to children, parents and carers of children with vitiligo.

Denise Oduntan, one of the PSN leaders, shared why the network had arranged a second meeting:

We received great feedback from our first event and had a great time meeting the parents, grandparents and children that joined us. Based on some of the learning from our first meeting, our next meeting will kick off with 15 minutes for the children to share their experiences and allow for sharing and some fun games.

Parents can then stay on and talk about some of the challenges or questions they may have. 

We continue to look forward to meet you all and continue to grow this event and our parent and children network. 

The event is free to join and take place on the 24th of July at 5pm BST.

The event will be split into 2 parts:

5pm – 5:15pm: 15 minutes dedicated to children, giving kids the opportunity meet virtually and play a couple of games together

5:15pm – 6pm: 45 minutes dedicated to parents & carers of children with vitiligo to share their experiences and create a support network together.

Register your interest in the event by emailing us: parentsupport@vitiligosociety.org.uk

Why not consider joining the PSN management committee?

As part of the launch we are seeking parents and carers who would like to be involved in organising and leading the network – if this sounds like something you would be interested in then please email us at parentsupport@vitiligosociety.org.uk

Vitiligo bear project receives funding!

In April we received incredible news that the Aviva Community Fund had chosen to support our Vitiligo Bear Project.

Over the past 40 days our crowdfunding campaign attracted 159 pledges, raising an incredible £4,418, smashing our original target! Not only have we help secure the funds we need for the project, we have helped raise awareness of the condition too.

What is the bear project?

We know that being diagnosed with vitiligo can be life changing and really tough. For children, it can be even more difficult. Currently there are so few toys out there designed with kids who have vitiligo in mind. 

The project is to design and manufacture a teddy bear that children with vitiligo can identify with. The teddy’s fur will mirror the patches that vitiligo causes in skin.

Why is the bear project important?

Manufacturing this toy and making it available will help to:

normalise the condition for young peopleprovide an educational tool when a child explains their vitiligo at school or to friends and familyoffer comfort to a newly diagnosed child 

The money we raise here will be used for the design and production costs of an initial batch of bears. The bears will be made available via our (soon to be launched) online shop and then money raised from the distribution of these will allow us to make more bears available and help support the work we do.

There has never been anything like this for children with vitiligo.

How did the Aviva Community Fund help?

Aviva gives all it’s employees £25 to pledge to a project – £1,300 of the funds we raised came from these employees. In addition, Aviva gave us the platform on which to crowdfund and mentored us through the process.

What happens next?

We’re working with our chosen bear manufacturer to finalise the design of the bear and then go into production. The Bear will be available to purchase on our online shop which we hope to launch over the next couple of months.

World Vitiligo Day 2021 – Global Events Calendar

What is World Vitiligo Day?

Now in it’s 11th year, the idea of World Vitiligo Day was first proposed by Ogo Maduewesi, a fellow Vitiligan and the founder of the Vitiligo Support and Awareness Foundation (VITSAF) in Nigeria.

In 2011, after the idea was spoken about, a small group of activists came together on June 25th to host a Vitiligo Purple Fun Day.

Yan Valle, CEO of the Vitiligo Research Foundation in New York, saw this as an opportunity to create something bigger and wanted a day dedicated to vitiligo awareness and with some work on his part, World Vitiligo Day was born and has since become the most significant event in the calendar for those with the condition. 

Here we bring you a roundup of all the events on offer this month:

UK: The Vitiligo Society

Thursday 24th June, 7pm: IG Live with Natalie Ambersley, Sheetal Surti and Alicia Roufs

Vitiligo Society trustee Natalie will be hosting an IG Live with Sheetal Surti, who recently gave a moving interview on BBC Radio 4 on how her changing skin had impacted the way she felt about who she was, along with Alicia Roufs from VITFriends, a Minnesota based support group that actively raises awareness of vitiligo globally.

Friday 25th June, 12 midday: IG Live with Natalie Ambersley & Sonya Danita Charles

Natalie will be back and this time interviewing model, influencer and body positive activist, Sonya Danita Charles who is known for her collaborations with notable brands such as Levis, Maybelline, Dove and Mac and also, her personal story which has appeared in magazines such as Marie Claire, Cosmopolitan, Women’s Weekly and L’Officiel. 

Joining an IG Live: You can join the IG Lives by accessing our Instagram page: instagram/vitiligosociety . Once on our page, the profile photo will change to live once the live has started. Select the picture when you see this. 
We will also share the recording on our YouTube page and there will also be a recording saved on our Instagram page for anyone who might miss it. 

UK: Vitiligo Song Launch with Little Strings & Charlie Frances

Join Little Strings and Charlie Frances for the 15 minutes before Vitiligo Song officially launches on Bandcamp for the world to hear on World Vitiligo Day!

They’ll be talking about the songwriting process; collaborating virtually and receiving audio submissions from so many wonderful people, telling their stories of having this condition. Charlie and Clare (Little Strings) are two songwriters in the UK with vitiligo who will share how writing this song has affected their viewpoints of vitiligo and songwriting.

They’ll be updating their event page with the link to download the song! All proceeds from the song are going towards the Vitiligo Society. The event is host here on Facebook Live.

World Vitiligo Day Virtual Headquarters

Wednesday 2nd June – Saturday 26th June: Various Celebrations

The World Vitiligo Day virtual headquarters are set in Jakarta, Indonesia this year. The honorary President is Dr. Srie Prihianti Gondokaryono, supported by a strong team from the Indonesian Society of Dermatology & Venereology. 

During the entire month of June, the WVD headquarters will hold 45-minute Instagram Live sessions (@perdoski.id) once a week, on Wednesday nights at 4pm.  

June 2 : Vitiligo in children June 9:  Vitiligo managementJune 16: Quality of Life of vitiligo patientsJune 23: Research UpdateJune 25: World Vitiligo Day (up to 3 hrs) USA: The Global Vitiligo Foundation and MyVitiligoTeams

Saturday 26th June, 6pm: Virtual WVD Celebration

MyVitiligoTeam and the Global Vitiligo Foundation have an incredible line up of activities and speakers including: FDA Meeting Update, Doctor Panel Q&A, Clinical Trial Overview, Arts of Vitiligo and Post Event Social. Speakers include Dr John E Harris, Dr Richard Huggins, registered dietition Jake Webber and Alicia Roufs founder of Minnesota VITFriends.

The event is free, click HERE for more information and event registration.

South Africa: The Vitiligo Society of South Africa

Saturday 26th June, 5.30pm: Live webinar with global speakers

The Vitiligo Society of South Africa are hosting a virtual World Vitiligo Day celebration involving speakers from across the globe (full programme to be announced). Email hello@allmedicalmedia.com for more information.

France: Association of Francaise du Vitiligo

Wednesday 2nd June – Saturday 26th June: Vitiligo Tour du France

From June 2 to 26, 2021, the French Vitiligo Association will travel across France in order to: Recognise vitiligo as a real disease and improve medical and institutions care; eliminate the burden of vitiligo and improve the quality of life of the people suffering from it; raise public awareness and bring a new perspective to vitiligo & meet and collaborate with doctors and researchers to find new therapies.
 
In each town, there will be organised: Corrective make-up workshops, Origami – Skin Art workshops; meetings with patients, their families and the general public; interviews with the doctors of the Dermatology Department of the University Hospital; exchanges with health, education and sports professionals & interviews with local media.

India: Aarus Foundation

Monday 21st June – Friday 25th June: Virtual events and celebrations

20th June: Inspirational Seminar on “Know Your Worth” by Madhusudanavisnudas Madhusudana Vishnu DasIt’s free for all but registration is compulsory. https://bit.ly/3wT65SI

21st June: Conversation with Parul Shrivastava live on Instagram.

22nd June: Conversation with Mahesh Gowda live on Instagram.

23rd June: Conversation with @notbuffenough Nikhil Chugh live on Instagram.

24th June: Music video release on YouTube

25th June: Online meetup along with talent show.

Visit the Foundation’s facebook page for more informaiton: facebook.com/AarusFoundation

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