Ichthyosis Support Group Beyond the Office

Over the summer and early autumn months, Mandy, our Medical and Communications Manager on behalf of the Ichthyosis Support Group (ISG) proudly represents our community at major national and international dermatology events. These meetings are vital opportunities to raise awareness, strengthen relationships with healthcare professionals, and ensure that the voices of people living with ichthyosis are heard at every level. 

British Association of Dermatologists (BAD) Annual Meeting – July

The BAD meeting is always a busy and meaningful few days. In 2025 Mandy was joined by ISG members Jim (Dundee) and Lesley (Perthshire), helping to put lived experience front and centre. 

Lesley shared her experience of the day: 

I expected an interesting day out, but I got so much more! I was invited by Mandy to join her at the British Association of Dermatologists Conference, this year in Glasgow. I thought it would be really interesting to see how the conferences work and perhaps meet some other patient support groups and professionals. In reality, I was introduced to so many interesting people by Mandy, who seems to know everyone! Highlights were hearing the stories of people with other chronic skin conditions, seeing the huge range of products being touted by pharmaceutical and cosmetic companies, and being really reassured and encouraged to see that there are many health professionals out there who are really dedicated to research and study to help us manage our skin. 
A totally unexpected bonus was being advised by two of the most eminent international professors of dermatology that the condition I thought I had (IV) was in fact probably a PPK. Where else would I get such an opportunity! Huge thanks to the ISG and to Mandy in particular.

Lesley

Her experience highlights exactly why ISG involvement in these events is so important - real, sometimes life-changing conversations happen when the patient voice is present. 

Other key moments from the BAD meeting included:

  • Connecting with familiar dermatologists and many new clinicians who care for people with ichthyosis.
  • We heard from Dr Mark Eisner, whose research analysing ichthyosis data in England has been funded by the ISG. This work is expected to spark further research and strengthen understanding of how ichthyosis affects people.
  • Presentations on improving access to genetic testing using ichthyosis as an example will help dermatologists feel more confident in diagnosing their patients.
  • Our location at the exhibition meant we were highly visible, ensuring dermatologists, trainees, and researchers know that the ISG is here to support them and their patients. 

 

European Network for Ichthyosis (eni) Representation – September, Paris 

As President of the European Network for Ichthyosis (eni), Mandy played a central role in two landmark international events. 

  1. Epidermal Differentiation Disorders (EDD) Symposium 

This first-of-its-kind meeting brought together world experts and global patient organisations to introduce the new terminology “Epidermal Differentiation Disorders” (EDD), which includes the ichthyoses and palmoplantar keratodermas. 

  • Patient voices were not only included and but advocates were invited to present, and were treated as essential partners in shaping future research and clinical care.
  • The new terminology reflects scientific advances and aims to create clearer communication between patients, clinicians, and researchers.  

  1. EADV Congress

Representing the UK, together with representatives from Germany and Spain, Mandy attended the EADV Congress - one of the largest dermatology events in the world. 

  • The 3 representatives manned the patient organisation booth, holding valuable conversations with clinicians, researchers, students, and industry partners.
  • Attended sessions on AI, social media, and patient safety which resonated strongly with both patient advocates and dermatologists.
  • At the EADV Patient Taskforce meeting, they pushed for greater visibility and inclusion of patient perspectives in future congresses. 

These events show how far the community has come - the patient voice is no longer an afterthought but increasingly recognised as essential to progress. 

British Dermatological Nursing Group (BDNG) Conference – September/October, Harrogate 

Mandy, alongside members Gulzeab and Amanda, spent three days connecting with dedicated dermatology nurses by. 

  • Raising awareness of ichthyosis and the new EDD terminology.
  • Building relationships with the nurses who provide crucial hands-on support to patients with ichthyosis.
  • Shaping future educational resources, with work already underway for ichthyosis related projects planned for 2026.
  • Thanking our supportive corporate partners in person and strengthening collaborations. 

 

Why This Matters for ISG Members 

These events are more than conferences - they are opportunities to make sure your experiences influence education, research, diagnosis, and care. By being present: 

  • We help professionals understand the daily realities of ichthyosis.
  • We encourage more accurate diagnosis and improved genetic testing.
  • We build momentum for new research and better treatments.
  • We create direct pathways for clinicians to connect with the ISG and refer families for support. 

And most importantly, we ensure that the ichthyosis community is seen, heard, and represented. 

Together, we are shaping the future of ichthyosis care - in the UK, across Europe, and worldwide. 

 

 

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Author: Mandy Aldwin

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