The Vitiligo Society

Breaking News! Today Final Draft Guidance was released from The National Institute for Health and Care Excellence (NICE) announcing that it will not approve the new drug, Ruxolitinib, for use to treat vitiligo through the NHS on prescription. Ruxolitinib is currently the only licenced treatment for vitiligo, and could have improved the lives of over 1 million vitiligo patients in the UK. Read the full article here to find out what happened, and how you can help us fight this decision: https://lnkd.in/ef8Y2EN8 #vitiligo #vitiligoresearch #vitiligotreatment #vitiligosupport

Superstar fundraiser Adam recently ran the Oswestry 10K to raise funds for The Vitiligo Society! Reflecting on why he decided to take on the challenge, he said: "I have personally been affected by vitiligo for most of my life. The Vitiligo Society helped me come to terms with my concerns and appearance and I now volunteer for the charity. "I'd love to raise some money for this charity, but if all I manage is spreading some awareness of vitiligo, then I'll consider this a success." None of our work would be possible without people like Adam. It’s thanks to the dedication of all our fundraisers that we can advance research, support people with vitiligo, and campaign for our community. 💙💜🤍 You can support Adam's fundraising efforts here: ➡️ https://lnkd.in/efJD6gQD Find out how you can kickstart your own fundraiser on our website: ➡️ https://lnkd.in/gTkiu48b

The VitLife "How art therapy has helped me change the way I feel about having vitiligo" Yilan Wang, an illustrator and tattooist, developed vitiligo when she was three years old. It started as a patch around her eye, which later spread to other parts of her body and turned her eyelashes and hair white. She shares how art helped her express her feelings about her skin. https://lnkd.in/eWEzq_iG #vitiligo #vitiligosociety #vitiligoawareness #vitiligosupport

Are you looking for ways to become more involved in the vitiligo community? Then join our team tonight for a chat. Every Thursday between 7pm & 9pm we are available for a live chat on our website chat via instant messenger. Our volunteers all have lived experience of vitiligo, so they understand how it feels to be diagnosed with the condition. They can help signpost you to information about vitiligo, or just be there to listen to anything you want to share. Visit our website https://lnkd.in/de2MKSNS and open a chat box to start talking to us. #vitiligo #vitiligosociety #vitiligoawareness #vitiligosupport

Our quote of the week: "As human beings, our job in life is to help people realize how rare and valuable each one of us really is, that each of us has something that no one else has-or ever will have-something inside that is unique to all time." ~ Fred Rogers #vitiligo #vitiligosociety #vitiligoawareness #vitiligosupport

The VitLife "Our community nominate their top 3 cosmetic camouflage products for vitiligo skin" We are often asked to recommend ways for people to cover their vitiligo, but as a charity we try to avoid recommending specific products. Instead, we decided to ask our community to share the products they use and why, hoping that this will help others find cosmetics that will help them too. https://lnkd.in/eVEhju5R #vitiligo #vitiligosociety #vitiligoawareness #vitiligosupport

Breaking News: Ruxolitinib (Opzelura) Appeal Hearing As you may be aware NICE (the regulatory body which decides whether a treatment should be made available on the NHS) decided earlier this year not to recommend Ruxolitinib (Opzelura) for use in the NHS. As one of the largest and longest established vitiligo charities in the world we felt it was essential to do everything in our power to contest this decision. We have been campaigning hard on behalf of patients for better treatment options for years, and this process represents a turning point for our work. The Appeal Hearing was held last Friday and our points were in relation to the fact that NICE consistently failed to act fairly in the manner by which they engaged with our organisation throughout this process. We were grateful that NICE recognised their failings publically in this meeting, and acknowledged the lack of time we were given to adequately respond to consultation. There was also a public acknowledgment that NICE could have included more patient representation in key meetings, and were unable to justify their decision to only invite two individuals to speak at key meetings. In addition, there was a recognition that there was no representation or consideration given to young people throughout the process - a key group of patients who our research shows are more statistically likely to significantly struggle with the condition. We want to thank everyone for their kind words of support following the meeting. It was a privilege to be present to represent vitiligo patients and we thank everyone who helped shape our opening and closing statements - it was a real community effort. We also want to thank all those who supported us with a donation after the event - an incredible testament to how our words resonated with so many people listening in. The Appeal Hearing will not result in the decision being overturned, the best possible outcome is that one or more of the appeal points are upheld and final draft guidance is returned to the NICE Appraisal committee. We hope to be able to communicate the outcome with you all in a couple of weeks. For too long the vitiligo community has felt unheard, unseen and dismissed by the medical and scientific community. The most important thing we took away from the meeting was that there are a number of incredible organisations, experts and individuals who are trying to change this. The hope for the vitiligo community rests in our ability to work in collaboration to ensure the best possible outcomes for everyone affected by this devastating condition. For more information on the Appraisal Process: https://lnkd.in/gjYpRzEw Donate to support our work: https://lnkd.in/dtCBP7xK

Our quote of the week: “When you embrace your difference, your DNA, your look or heritage or religion or your unusual name, that’s when you start to shine.” ~ Bethenny Frankel #vitiligo #vitiligosociety #vitiligoawareness #vitiligosupport

The Vitiligo Society wishes all those observing the Jewish holiday a meaningful Yom Kippur. #YomKippur #vitiligo #vitiligocommunity #viiligosupport

Our next Parent Support Meeting is taking place at 8.30pm on Wednesday 16th October 2024. If you are supporting a family member with vitiligo then please consider joining us: Register here: https://viti.li/parents #vitiligo #vitiligoparents #vitiligokids #vitiligosupport