Connecting, Supporting & Learning: All About Alopecia
Co-producing an event with people affected by alopecia
Alopecia is not life-threatening, but it is life-changing when you don't recognise yourself anymore.
Rita, Public Partner
Around 100,000 people in the UK are affected by alopecia, a range of conditions that cause hair to fall out of the scalp or body.
All About Alopecia (AAA) brought people and researchers together to share experiences, learn practical tips on living well and to hear about cutting-edge research. We worked alongside people with alopecia in Greater Manchester, research and charity partners to create an event which prioritised lived experience, catered for different needs and supported wellbeing.
Experiencing alopecia can knock people’s confidence and people feel alone and isolated. Being part of a community can bring strength, support and feeling understood.
Alopecia can be an isolating condition, and events like this make a real difference by helping people feel less alone while also engaging with research. We are not only sharing research but also creating community and support. That is impact in itself, and it shows why involving people in our work is so important for research that benefits all.
Dr Matt Harries, Senior Lecturer and Consultant Dermatologist
A day shaped by lived experience and collaboration
Collaborating with patients, researchers and clinicians enabled us to create a space where people found something new; about themselves, research or an eyebrow stick-on tattoo that they now love.
I met a nurse who gave me eyebrow stick-on tattoo that I love and didn’t know anything about previously.
Event Participant
Researchers shared updates about research into potential alopecia treatments, diagnosis and more. People left informed and reassured of where research is going.
I have walked away knowing a little bit more about alopecia and treatments … I definitely have a greater understanding through speaking to others with the condition.
Event Participant
The opportunity to connect with others sharing similar experiences was deeply valued. People shared their wins, challenges, tips and smiles whilst roaming stalls, having a cuppa or making art.
It’s helped me to process my feelings towards alopecia in a way that I haven’t before and I found comfort, encouragement and strength in the people I met.
Event Participant
The effects on research
The event sparked new conversations about research happening in the Dermatology Theme at the NIHR Manchester Biomedical Research Centre where researchers are exploring why skin conditions happen, and how they can be better diagnosed, cared for and managed.
Many researchers left with fresh motivation, inspired by the conversations and connections they made during the day.
All About Alopecia created space for connection, learning and exploration. If you are interested in helping to shape future research get in touch with us to find out more about the Get Vocal on Dermatology Network.
This event was funded by the National Institute for Health and Care Research (NIHR) Manchester Biomedical Research Centre (BRC) and co-delivered by Vocal with patients, researchers, Alopecia UK, The University of Manchester and the Northern Care Alliance NHS Foundation Trust. Dr Matthew Harries is Deputy Lead of the Inflammatory Hair Diseases research programme as part of the Dermatology Theme at the NIHR Manchester BRC.
