Every day, people living with ichthyosis face challenges that most of us will never experience.

Ichthyosis is a group of rare genetic skin conditions that can affect comfort, confidence, health, and everyday life. While the condition may be rare, the impact is very real for the individuals and families living with it. That’s why fundraising matters.

Fundraising helps the Ichthyosis Support Group continue vital work that supports the community and drives progress. The funds raised help support research into ichthyosis, enabling scientists and clinicians to better understand these complex conditions and work towards improved treatments and care.

In this video, you’ll hear directly from researchers about why funding is so important - especially for the rarest types of ichthyosis that might otherwise be overlooked.

Your support also helps bring people together. Through Family Conferences, Family Days and Children's Camps, individuals and families affected by ichthyosis can connect with others who truly understand their experiences. These gatherings provide trusted information, shared learning, reassurance, and a sense of belonging that can be life-changing.

Fundraising can be challenging, but it is nothing compared to the strength and resilience shown every day by those living with ichthyosis. By supporting fundraising and raising awareness, you are helping to fund research, strengthen the community, and ensure that people affected by ichthyosis never feel alone.

You can make a difference today. Donate to support our work, start your own fundraiser, or share this video to help raise awareness. Every action helps fund research, bring people together, and support individuals and families affected by ichthyosis. Together, we can create change. 

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!

Donate here

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