Last weekend we were delighted to attend GlobalSkin's conference in Brussels. (GlobalSkin is also known as The International Alliance of Dermatology Patient Organisations). The event, called 'ELEVATE 2023', brought together nearly 200 attendees from a variety of patient organisations representing different skin conditions.

Our Operations Manager, Amy Johnson, was the Alopecia UK representative in attendance. Amy chatted to people from all across the world, learning of different challenges being faced, but also engaging on the similar issues faced such as difficulties in accessing dermatology appointments and new treatment options. It was both reassuring and disappointing to learn that the UK is not alone in these struggles.

The theme of ‘ELEVATE 2023’ was to do just that. To elevate patient organisations, strengthen connections and inspire each other. Amy confirms that this is exactly what happened:

“It was a brilliant event. I attended some very informative talks and workshops and have come away feeling energised and with new ideas on ways we can try to tackle some of the issues currently being faced by those with alopecia. Whilst it became clear that some of these issues are difficult ones to resolve, there is definite strength gained in knowing we are not alone, and real power in information-sharing.”

(Amy is pictured left with Mandy from the Ishthyosis Support Group, another UK-based charity)

Amy also learned about a new data collection study and measure which will look at the impact of dermatological diseases, including all types of alopecia. The Global Research on the Impact of Dermatological Diseases (GRIDD) is the first global patient impact project in the history of dermatology. GRIDD includes a new measurement tool, the Patient-Reported Impact of Dermatological Diseases (PRIDD) which has been designed to capture the full impact of dermatological conditions, including alopecia, on patients’ lives. The study hopes to capture responses from 10,000 dermatology patients before the end of September and we hope that there will be lots of people with alopecia within that number.

Amy says, “In our advocacy work around campaigning for new treatments to be made available to those with severe alopecia areata, it was clear that an appropriate quality of life measure was not being used in the clinical trials. Developed by GlobalSkin in collaboration with researchers at Cardiff University and University Medical Centre Hamburg-Eppendorf, PRIDD has been designed with the input of patients affected by skin diseases, including alopecia. It is hoped that this new measure will better demonstrate the impact of skin disease than existing quality of life measures, which do not illustrate the full impact of living with a skin disease. GRIDD is a ground-breaking research project and hopes to collect the views of 10,000 skin disease patients. It would be fantastic if lots of people with alopecia, of all types, would consider taking part.”

You can find out more about GRIDD, including how to take part, here.

Other interesting take home messages from the Global Skin conference were:

  • 50% of people in any population have a skin disease in any year
  • Disease severity does not correlate with mental health impacts (something were already aware of at Alopecia UK but it was good to hear it confirmed by the experts and other patient organisations share their experience of on this)
  • Skin diseases are the world’s most prevalent cause of illness with over 3,000 diseases affected skin, hair and nails
  • Research into one skin condition can lead to treatments in others. An example was given of research in psoriasis leading to treatments in inflammatory bowel disease, rheumatoid arthritis and multiple sclerosis.

A huge thank you to GlobalSkin for creating such a great event and for providing a travel grant and hotel accommodation, meaning it was possible for Alopecia UK to attend.