Living with ichthyosis can sometimes feel isolating, but no one should have to face it alone.

In this video, members of the ichthyosis community and healthcare professionals share why the Ichthyosis Support Group (ISG) and its events, including the Family Conference, are so important.

These gatherings bring together people who truly understand the challenges and experiences of living with ichthyosis. For many families and individuals, meeting others with shared experiences is incredibly powerful. It creates a space for connection, reassurance, and practical support, while also allowing healthcare professionals and the community to learn from each other.

The knowledge shared and the relationships formed at these events can have a lasting impact long after the event ends.

Whether you have attended an event before or are discovering the community for the first time, we hope this video shows the warmth, understanding, and strength that comes from bringing people together.

Support from funders and partners helps make these life-changing events possible, ensuring that individuals and families affected by ichthyosis can access information, connection, and a community that understands. 

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.