Let’s Talk Vitiligo

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New research to raise the profile of vitiligo

Our charity recently commissioned ground-breaking research to understand the physical, psychological and social implications of vitiligo. This major study, conducted by an independent research organisation, included responses from over 700 people and was the largest ever survey of people living with vitiligo in the UK.

The results reveal significant findings which highlight the pressing need for better support for people with the condition. Using this data, we have now launched a PR campaign to publicise the findings with national and regional media. By doing this, we seek to raise awareness of the issues among healthcare professionals and the wider public.

The #LetsTalkVitiligo campaign can reveal that:

  • Two-thirds of people say vitiligo negatively impacts their mental health and makes them feel insecure and self-conscious
  • 8 in 10 people say vitiligo negatively affects their appearance
  • Two-thirds of people with vitiligo want better access to GPs and dermatologists
  • Just 15% of those diagnosed felt informed about vitiligo, with a third of people feeling dismissed and confused when first speaking to their GP or healthcare professional.

The research findings have been brought to life by our #LetsTalkVitiligo video, featuring the real stories of people in our community living with vitiligo.

There are many more detailed findings in our report where key findings are presented and categorised into the following:

  • Awareness and knowledge
  • Vitiligo journey
  • Overall experience
  • Impact
  • Coping strategies and resources
  • What do people want to be different?

We believe that a vitiligo diagnosis should be the start of a journey filled with information and answers to help people come to terms with the mental and physical impact of this condition. Sadly, our study highlights that this is often not the case. With this new campaign we begin to highlight these issues and fight for those who need better support.

Coming soon: A new awareness campaign for vitiligo

Later this year we will be launching a separate public awareness campaign to help further raise the profile of vitiligo in the UK. It is our aim that this will further help combat some of the misconceptions and social stigma around the condition This work represents another exciting milestone for our charity and we are asking that you consider supporting this mission by joining our charity as a member or making a donation. All the money we raise supports our mission to improve the wellbeing of those living with vitiligo.

Influencing future work

Another key aim of the research was to help us at The Vitiligo Society to prioritise the work that is most important to our community. This research has clearly set out a mandate for us in terms of what work we need to undertake over the next 3-5 years to better support our community. The feedback provided via the research survey will be incredibly influential in setting the direction for our new strategy which we aim to release in the next 12 months.

Funding disclosure:

The survey and report was prepared by Social Change Ltd for the Vitiligo Society, with funding assistance provided by Pfizer. While Pfizer has contributed financial support to this project, it is important to note that the content, findings, and opinions presented within this report are not that of Pfizer. The Vitiligo Society and Social Change Ltd have maintained full editorial control over the report’s content, ensuring independence and impartiality in its presentation.

The awareness campaign project is supported by an educational grant from Incyte Biosciences UK Ltd and Pfizer have also contribute financial support. The Vitiligo Society will maintain full control over the projects management and content, ensuring independence and impartiality in its work.

When it comes to any external funding we follow the current guidance and rules as set out by the Charity Commission and the Fundraising Regulator. We report any research collaborations and/or financial contributions received from industry in our annual reports and accounts as well as being transparent about our partnerships on our website.

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