Reflections on the ISG Family Conference 2025

We were thrilled to have 45 families register for our Family Conference at IWM Duxford, Cambridgeshire, representing a rich mix of single adults, couples, parents and children, grandparents, and everyone in between. Members travelled from all over the UK, from Ireland and even Turkey, consisting of around 70 adults and 35 children creating a vibrant and welcoming atmosphere. Those with ichthyosis ranged from just 5.5 months old to 68 years, and represented at least eight different types of ichthyosis, with some members not yet having a confirmed diagnosis. It was particularly wonderful to see so many adults with ichthyosis joining us, some with parents, some on their own, and some with partners. 

Each year, we select a different location to make our events as accessible as possible for members across the UK and Ireland. This year, we welcomed many first-time attendees alongside familiar faces returning to meet up with friends and family in the ichthy community. Returning members often share valuable insights with those at earlier stages of their ichthyosis journey, offering guidance and reassurance. 

The day was supported by nine healthcare professionals, including dermatologists, a dermatology nurse, and a clinical psychologist. They delivered engaging sessions covering the latest information on ichthyosis, psychological support strategies, and practical approaches to living with the condition at different ages. Sessions were tailored for age groups, ensuring the information was relevant and meaningful for both children and adults. 

Our Family Conference sessions were warmly received, with participants describing them as “practical, supportive, and informative”. Highlights included the Parenting Tips and Psychological Impact sessions, which focused on the emotional and psychological effects of having ichthyosis or caring for someone with it. Attendees praised the Caring for Ichthyosis discussions for different age groups, describing them as “clear, relevant, and insightful, with plenty of practical tips”. One participant said, “It was great to feel part of a group of people who could understand each other’s challenges”, while another noted, “Massively being new to this world, everyone was so helpful and understanding. We felt part of the community instantly.” 

The feedback from our post-event survey reflects how much the conference was valued: 

• 91% of participants rated their overall Family Conference experience as 5/5 and over 92% would definitely attend another ISG event – we know this is influenced by location, date and people’s availability.
• Presentations on epidermal differentiation disorders and early research results from an epidemiology of ichthyosis in England study were highly rated, with almost all attendees giving top scores for the information presented.
• Opportunities to meet and talk with other families and the ISG trustees and staff were praised, as was the helpfulness of the product samples provided at the event. 

Many attendees highlighted the benefits of meeting others in the community, sharing ideas, and learning practical tips. Comments included: 

“It helped me to make contact with other people and share ideas and life experiences. It made me feel less isolated and more connected.” 

“We love seeing old friends, lovely for the kids to connect. Also lovely to share experiences in the sessions.”

We were also joined by pharmaceutical companies, who contributed goody bag items for all attendees, and two biotech companies developing new treatments for Netherton syndrome participated in a dedicated session, giving those affected an opportunity to share experiences and hear about developments in treatment. 

Our younger attendees had a wonderful day exploring the museum with peers or enjoying the onsite crèche, while the older children were thrilled with the gaming bus later in the afternoon. Knowing their children were having fun and being well looked after meant parents could relax and fully participate in the sessions and presentations.