The Ichthyosis Support Group (ISG) proudly attended the British Association of Dermatologists Annual Conference (BAD2025) – one of the most important events in the dermatology calendar every July.

Joining Mandy, our Medical and Communications Manager at the ISG stand were two fantastic member volunteers, Jim from Dundee and Lesley from Perthshire, who each gave their time to help us engage with hundreds of delegates across the three-day event. It was a powerful opportunity to raise awareness of ichthyosis, share lived experiences, and ensure the patient voice was front and centre.

A Space for Advocacy and Impact

Throughout the conference, we had a steady flow of conversations with dermatologists, specialist nurses, researchers and junior doctors – all eager to improve their understanding of ichthyosis. Many were interested in learning more about the challenges faced by people living with the condition, and how they could play a role in improving care, diagnosis and research.

These conversations weren’t just informative – they were impactful. A particularly moving moment came when volunteer Lesley spontaneously spoke to several leading dermatology experts – Prof Celia Moss, Prof Edel O’Toole and Dr Amy Paller (USA). Independently, each of them shared the same updated opinion on her type of ichthyosis – providing Lesley with a revised diagnosis, many years after her original one. This emotional and life-changing interaction highlighted just how vital our presence at these events is – not just to influence systems, but to support individual members of our community directly.

Progress in Research and Awareness

We were also pleased to hear from Dr Mark Eisner, who presented early findings from ISG-funded research using NHS England patient data. This important work is paving the way for future research and a better understanding of the ichthyosis population. He’ll be updating our community more fully soon.

Ichthyosis was also used as a case study in a session on genetic testing in dermatology practice, presented by Dr Eisner, Dr Anna Dubois, and Prof Neil Rajan. It was incredibly encouraging to see our condition featured in such a meaningful way. ISG and the importance of patient organisations were mentioned throughout – a true reflection of how advocacy and lived experience are shaping clinical progress.

Challenges and Collaboration

We also took the opportunity to reconnect with several long-standing clinical and industry supporters. While many companies shared that they are currently facing internal restructures and tighter budgets, it was important to maintain dialogue and continue advocating for investment in ichthyosis-specific research.

Biologics – currently dominating treatments in conditions like eczema and psoriasis – remain a difficult area to tap into for rare conditions like ichthyosis, due to limited data, funding, and regulatory constraints. However, we're encouraged by the work of fellow rare skin condition groups like DebRA, and we’re determined to pursue similar pathways with guidance from our Medical Advisory Board (MAB).

Why It Matters

Events like BAD2025 remind us just how vital it is that ichthyosis is represented in wider dermatological conversations. Our presence helps:

• Improve clinical understanding of ichthyosis
• Encourage earlier and more accurate diagnoses
• Drive forward patient-led research
• Ensure those living with ichthyosis are not left behind

Our sincere thanks to Jim and Lesley for being incredible ambassadors for ISG, and to the British Association of Dermatologists for welcoming and including patient organisations.

In Summary

BAD2025 was a powerful reminder of how ISG’s work continues to make a difference. While there are still challenges – especially around engaging pharmaceutical companies – the conference reinforced the value of our voice, our community, and our mission.

Together, we’re raising awareness, improving care, and pushing for the change that people living with ichthyosis truly deserve.