In 2023 we asked people across the UK to share their experiences of living with vitiligo. More than 1,000 people took part. and that research has:

That experience reinforced the importance of collecting structured patient evidence. It allows us to demonstrate need clearly and to represent the community in a way that carries weight with decision-makers. We are now asking for your support again – this is not just another survey!

We are part of the Vitiligo International Patient Organizations Committee (VIPOC), a global network of patient organisations working to improve outcomes for people living with vitiligo.

VIPOC has launched Vitiligo Patient Views, the first global survey designed to capture the experiences of people with vitiligo and their caregivers at scale. The survey has been developed in collaboration with clinicians, researchers and patient organisations. It is available in multiple languages and is open to participants around the world.

This survey does not repeat the work we have already carried out in the UK. We have been directly involved in shaping it to ensure it adds further value.

It includes some exploration of quality of life and psychosocial impact, but places a stronger emphasis on healthcare experience. This includes the pathway to diagnosis, interactions with primary and specialist care, and access to treatment. It also looks in more detail at how treatments are experienced in practice, including what has been effective, what has not, and where there are gaps in availability or support.

In doing so, it provides a more detailed and practical understanding of how care is currently delivered, and where improvements may be needed.

Although this is a global study, the data will have direct relevance for our work in the UK. It will strengthen our ability to:

Our previous research demonstrated how UK-specific evidence can be used effectively. This survey builds on that by providing a broader dataset, while still allowing us to draw out insights relevant to the UK context.

The survey takes approximately 20–30 minutes to complete and is open to:

If you are part of the vitiligo community, we would encourage you to take part and to share the survey within your networks. The more responses collected, the stronger the evidence base will be. Experience has taught us that we need to ensure we have at least 1000 respondents from the UK for the data to be considered significant by the media and decision makers – so please take part if you can.

You can access the survey here: https://bit.ly/4etDKLW
Read more about the survey here: https://www.vipoc.org/the-first-global-vitiligo-patient-and-caregiver-experience-survey-is-now-live/

If you have any questions then please contact our team: hello@vitiligosociety.org