Get help
Whatever you’re facing, we’re here.
Whatever help you need, we and other relevant organisations are here for you. Start with a conversation.
Free from UK landlines and mobiles. If we can’t take your call, leave a message and a member of our team will call you back as soon as possible.
Who are you looking for help for?
- My baby has just been born
- My child has ichthyosis
- I have ichthyosis
- I’m a teacher or employer
- I’m a health professional
First days
If your baby was born with ichthyosis
Words can not easily express the initial distress and shock of being told you have a collodion baby. You are not alone, and you can talk to us straight away.
Collodion babies are rare, so it is quite likely that the midwife and other medical professionals at your baby’s birth know very little about the condition. Contact us for information and advice, and to be connected with other people to share experiences.
Parents and carers
My child has ichthyosis
Practical help for every stage, from the first bath routine to starting school and growing up.
Adults
I have ichthyosis
Whether you were diagnosed as a baby or recently, there’s more support than you might think.
Schools and workplaces
I’m a teacher or employer
Clear, expert information helps you understand what someone with ichthyosis needs, from skin care to temperature sensitivity.
Health professionals
I’m a health professional
Signpost families to our helpline from the first appointment. It is often their first point of contact.
Become a member in three steps
Fill in the form
Membership is free. Your details are held on our membership database and will not be shared with any other organisation outside the ISG.
Stay in touch
Receive newsletters and e-newsletters, current research and invitations to local and regional meetings and the Annual Members’ Event.
Meet people who get it
Come to member events and residential camps for children, and get access to our Medical Advisory Board.
You can join if you
- have ichthyosis or a related condition
- are a parent, carer, partner or relative of someone with ichthyosis
Or you work with ichthyosis
- as a healthcare professional or researcher
- supporting someone at school, college or work
Already a member? Update your contact details.
Other organisations that can help
Other charities and organisations offering support you may find helpful. These links go to other websites.
Changing Faces
Supports and represents people who have visible differences, from any cause including skin conditions.
Contact
Support, advice and information for families with disabled children.
Turn2us
Information and practical help for people facing financial insecurity.
WaterSure
Helps people on some benefits with a water meter with their water bills.
European Network for Ichthyosis
A common voice for ichthyosis patients across Europe.
Genetic Alliance UK
The national alliance of patient organisations supporting all those affected by genetic disorders.
