In this film, members of the Ichthyosis Support Group (ISG), alongside medical professionals and researchers, share why the charity is such an important part of life for people affected by ichthyosis.

For many individuals and families, discovering the Ichthyosis Support Group means finally “finding family”. In this video, members talk about the power of connecting with others who truly understand the realities of living with ichthyosis. Through shared experiences, practical advice, and a supportive community, the charity helps people feel less alone and more confident in managing their condition.

The film highlights how the Ichthyosis Support Group brings people together, creating a strong network where individuals and families can access practical help, emotional support, and reliable information. Being part of the community provides a sense of belonging and holistic support that makes a real difference to daily life.

Medical professionals and researchers also explain the value of working closely with the ichthyosis community. By listening to the voices and experiences of patients and families, the Ichthyosis Support Group helps ensure that research focuses on what matters most to those living with the condition.

Together, this partnership between the community, clinicians, and researchers is helping to build understanding, improve support, and create hope for the future. 

We are grateful to the British Association of Dermatologists for their funding, which helped cover the costs of producing this video.

Are you or a loved one affected by ichthyosis?

We warmly invite you to connect with us and become a member of our supportive, friendly, and informative community. Whether you're newly diagnosed or have been living with ichthyosis for years, you're not alone. Join others who truly understand the journey, share experiences, access reliable information, and find strength in support.

Become A Member

If you've watched the video above — thank you! As you can see, our community is welcoming and helps people like you feel less alone on their ichthyosis journey.

Help Us Keep Supporting Families Affected by Ichthyosis

You've just seen the difference we make - but we can't do it without you.

Every donation helps us provide vital support, build community, and improve the lives of individuals and families living with ichthyosis across the UK and Ireland.

We also advocate for better care, fund vital research, and raise awareness about ichthyosis - not just the physical effects, but the emotional and psychological impact it has on individuals and families.

Donate today to help us continue our work. No matter the size, your gift brings comfort, connection, and hope. Thank you!

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Together, we’re stronger. Together, we’re not alone.