Find an Ichthyosis Specialist
Centres with specific expertise in rare and complex ichthyosis — UK, US, and Australia.
How to get a referral in the UK
Ichthyosis is classified as a rare skin disease. You have the right to request referral to a specialist centre. Ask your GP to refer you to one of the centres below, or to the nearest NHS dermatology department. If your local dermatologist is not experienced with your type, request onward referral to a tertiary centre. The GP letter template below may help.
Leading UK centre for genetic skin disorders. Extensive experience with all rare ichthyosis types including harlequin, lamellar, and CHILD syndrome. Active gene therapy research.
St John's — King's College London
Premier UK paediatric tertiary centre. Multidisciplinary teams for complex paediatric ichthyosis. Manages collodion babies from birth, Harlequin, and severe paediatric disease.
GOSH Ichthyosis Service
Specialist rare skin disease clinic at Queen Elizabeth Hospital. Experienced in adult ichthyosis management across all types.
UHB Dermatology
Primary referral centre for complex ichthyosis for Scottish patients. Strong genetics input.
NHS Lothian
UK's leading centre for Refsum disease. Expert dietitians and neurologists specialised in phytanic acid storage disorders. Can perform plasmapheresis.
UCLH Neurology / Metabolic
The ISG maintains an up-to-date database of UK dermatologists experienced in ichthyosis. Contact them for the most current specialist list in your region.
Helpline: available on website
One of the world's foremost ichthyosis research and clinical centres. Runs multiple clinical trials. Patients travel from across the US. Multi-disciplinary team.
Contact via FIRST (Foundation for Ichthyosis & Related Skin Types) for referral guidance
FIRST is the premier US patient organisation. They maintain the most comprehensive US specialist finder and can connect patients to experienced dermatologists nationwide.
Helpline: 215-997-9400
Strong research programme in autosomal recessive congenital ichthyosis. Published landmark work on CHILD syndrome treatment.
Leading west coast centre for complex paediatric ichthyosis. Multidisciplinary teams with nursing, nutrition, and physio input.
Primary Australian centre for paediatric rare skin disease. Research into genodermatoses including ichthyosis. Accepts paediatric referrals from across Australia.
Specialist rare skin disease service at Westmead. Dermatology and clinical genetics work closely together.
Contact for most current list of Australian dermatologists experienced in ichthyosis and rare skin conditions.
GP Referral Letter Template
Print and bring to your GP appointment, or email it ahead. Replace highlighted sections with your details.
Dear Dr [GP surname],
I am writing to request an urgent/routine referral to a specialist dermatologist with expertise in [your ichthyosis type] ichthyosis.
I have had this condition since [birth / childhood / specify]. My current symptoms include [scaling, itch, fissuring, overheating — describe your main issues].
I would specifically request referral to [name of centre from list above, or "the nearest tertiary centre experienced in rare ichthyosis"].
This is a genetic condition affecting skin barrier function. Current NHS guidelines support referral to specialist centres for complex or rare forms of ichthyosis. The Ichthyosis Support Group (ISG UK — ichthyosis.org.uk) provides additional guidance for referrers.
Thank you for your assistance.
Yours sincerely,
[Your name and date of birth]