During 2024 the Ichthyosis Support Group (ISG) has hosted a variety of events aimed at supporting everyone affected by ichthyosis, from those newly diagnosed to long-term sufferers. Whether you are a parent of a one-month-old baby, someone in their 70s who has only just received a diagnosis, or simply someone keen to learn more, our events are designed with everyone in mind. We believe that no one’s ichthyosis is too mild to attend—our community is here for you all, at every stage of your journey.

Our events are diverse and cater to a wide range of needs. Each year we visit a different part of the UK and Ireland to reach as many people as possible. If you ever wonder if the event location is too far away, we know you'll find it well worth the journey to participate.

We organise Family Days, informal gatherings at fun, enjoyable locations where members can meet others, share experiences, and talk about living with and managing ichthyosis. These are relaxed events where there are no medical professionals in attendance, but sometimes we have a few companies offering products for you to take home.

For those seeking more structured information, we also hold our Family Conferences, a full day packed with timetabled presentations, discussions, and Q&A sessions. This is an opportunity to hear from dermatologists, dermatology nurses, researchers, scientists, psychologists, and companies with relevant products. The children often have their own day filled with fun activities provided by volunteers or professional children's entertainment providers.

Although we weren't able to organise any this year, we are excited that we are aiming to re-commence our residential Children's Camps in 2025. These are usually held at a PGL site, for children aged 8-16 years. Children stay onsite with ISG volunteers and PGL staff to enjoy a full programme of activities. These events are especially important for children to feel less alone and spend time with their peers who also have ichthyosis. We know the children gain confidence and strategies to deal with their skin, that stays with them well beyond their time at camp. 

This year, we hosted three major events, reaching over 80 families. By 'family', we mean one of our ichthyosis families—whether that’s couples, parents with children, or adults with ichthyosis attending alone.

We are absolutely thrilled that 100% of attendees said they'd attend another ISG event!

Family Day at Beaulieu (1st June)

We kicked off with our first event of the year with a relaxed family day at the National Motor Museum in Beaulieu, in the South of England. The event was a chance for all ages to come together and enjoy each other’s company in an environment where everyone understands what it’s like to live with ichthyosis. There is nothing quite like spending time with others who truly understand the daily challenges we face. The feedback we received was incredibly positive, with many highlighting the importance of these shared experiences.

"It was lovely to meet other people who shared their tips and answers so many questions for me, thankyou!" 

Ichthyosis Information Day in Scotland (14th September)

We hosted a more formal event near Perth, Scotland. Our Ichthyosis Information Day was supported by a team of medical professionals who provided the latest insights on how to care for ichthyosis, genetic understanding, and recent research developments. It was an invaluable opportunity for attendees to ask questions and gain a deeper understanding of the condition. Attendees were asked to share three words that that came to mind about the event, and their highlight, everyone's feedback was overwhelmingly positive.

"Hearing about new/upcoming research is always interesting and hopeful, I think that was a great presentation to end with."

Barretstown in Ireland (29th-30th October)

Our final event of the year was held in the magical Barretstown in County Kildare, Ireland. While the adults enjoyed presentations and discussion with a team of medical professionals including a psychologist, dermatologist, dermatology nurses and researchers talking about the future of ichthyosis research, the children had a fantastic time with archery, arts and crafts, and plenty of games, all with the help of a wonderful team leader. As it was close to Halloween, the children (and adults including the medical professionals!) enjoyed dressing up and taking part in fun social activities during the evening. The kids were scarier than the adults, with a mixed variety of characters including a few witches, ghouls, an elf, bananas, pikachu, mario, the joker plus many other characters. 

"We were blown away by the whole event." 

Each of these events provided unique opportunities for learning, sharing, and building community, and the feedback from attendees speaks volumes about how important these gatherings are for those living with ichthyosis. All ages gain in confidence to live a better life with ichthyosis far beyond the reaches of our event into their everyday life. Friendships are formed and people return year after year to meet up with their 'ichthyfamily'. 

We encourage all members to attend future events, as they offer a chance to meet others, gain support, and access valuable information. No matter where you are on your ichthyosis journey, there is always something to gain from connecting with others who understand your experiences. Keep an eye out for our upcoming events, and we look forward to welcoming you to the next one!

We look forward to seeing you at one of our events in 2025, and our main annual event is set to be a Family Conference in Cambridgeshire. Please keep an eye out on social media and your email inbox for for more detail next year. Don't forget to check your spam and junk folders!