Alopecia UK is here to support all people affected by alopecia, whether that’s someone who’s losing or has lost their hair, or a friend or family member. We know that frequently information and support is not widely available or consistent, so we strive to provide that information and support to all. We also know that feeling a part of a community of people who share the same experiences can be hugely positive. Whether at an event, in an online forum or Alopecia Café, or reading a blog, speaking to or seeing someone going through the same feelings and experiences can help.

There is no official figure but a study carried out in 2021 suggested approximately 400,000 people in the UK have alopecia areata, or have had it in the past – roughly one in every 4,000 people. We want anyone affected by alopecia to know they can come to us for support, awareness and research because that is what we’re here for. We’re a small charity with a big reach, but we want to reach further.

Why an Equality, Diversity and Inclusion strategy?

We are committed to eliminating discrimination and encouraging diversity and inclusion within our organisation, and also to ensuring we help create a fairer, and more inclusive community for those affected by alopecia. Achieving fair treatment, opportunity and access to services and research for all, particularly for those who are from diverse backgrounds, or different circumstances can be difficult, but not impossible. We want to improve our culture of inclusivity in the way we support our communities regardless of age, gender, marital status, race, ethnic origin, colour, religion, sexual orientation, geographical location, or any other factor.

In order to widen the groups of people we support we have looked carefully at our community, tried to understand the groups that are currently under-represented and considered what we can do differently to reach them. Through conversations, dialogue and listening to our volunteers and wider AUK community we identified three groups of people who typically don’t access the charity’s services in the same way as others. We have then devised a clear strategy of how we’ll improve our reach to these groups and improve the diversity of our communities.

Who do we want to reach and what are we doing?

The 2021 study suggested that the incidence rate in children and teenagers was slightly higher than the overall figure – approximately 1 in 3,500. To understand how we could shape our content and activities to better support teenagers and young people with alopecia we established our first-ever Youth Voice Board in 2021. We have so far had a series of meetings with this group who have great ideas of how we can engage with more young people and provide additional support. We see them as a valuable addition to the charity who can help us support other young people.

The same study also suggested that alopecia areata is more common in people of non-white ethnicity compared to those of white ethnicity and three times as common in people of Asian ethnicity. We were naturally keen to learn and to grow our impact for people who may not otherwise have known that support was possible.  Through focus groups with different ethnic communities within the UK, we heard that people from minoritised ethnic communities would like to see more visual representation of diverse and ethnic communities represented throughout the charity - on our digital channels and at our meetings and events. We also recognise that we need a better understanding of the religious and cultural significance of hair loss in certain communities and how that might make it difficult for someone to engage with support. In response, we are reviewing our website, social media and other content to see where there are gaps in information for different communities and incorporate a wider range of events and activities into our calendar.

We believe alopecia areata is only slightly less common in men than in women but traditionally less men have engaged with AUK. A few years ago we successfully bid for funding to understand why. Through the men’s research project we carried out in 2020 and 2021, we identified that men with alopecia wanted more visual representation within AUK, and our communications and information more specific to men on aesthetic techniques. In response, we are working to develop more content aimed at men with alopecia, liaise with the relevant professionals to provide better information and signposting for aesthetic techniques, and review how we encourage more men to join our online support groups.

What now?

We recognise this is just the start and that there is much more to do. Our plan is not an end destination to our ambitions, but instead designed to provide insight on the journey we are about to take where we will listen, learn and adapt, and make long-term changes to how our charity operates. We hope that through the activities we’ve identified we’ll see an expansion of our AUK community to include people we’ve not previously reached.

If you identify with one of the groups we feel we are not currently reaching and would like to work with us on how better to offer support we’d love to hear your ideas.

Get in touch with us via email on: [email protected]  or come along to one of our support groups. Help us ensure that Alopecia UK is working for you.

Shalini Vaghela, Trustee for Alopecia UK and Equality, Diversity and Inclusion Lead