You're not managing this alone

The UK's primary support organisation for ichthyosis. Provides a helpline, family days, research funding, specialist nurse support, and peer networks. The first call for anyone newly diagnosed in the UK.

The world's largest ichthyosis charity. Extensive online resources, an annual family conference, research grants, medical advisory board, and a peer mentor programme. Excellent for rare type information.

European network of ichthyosis patient organisations. Connects patients across 15+ European countries. Links to national groups, events, and the ERARE research network.

UK charity for people with visible differences — scars, marks, conditions affecting appearance including ichthyosis. Free counselling, CBT programmes, employment support, and a helpline. Highly recommended.

UK advocacy organisation for rare disease patients. Useful for navigating NHS processes, appealing treatment decisions, accessing specialist centres, and understanding benefits/PIP applications.

Charity providing emotional support for people with skin conditions. Run by people with lived experience. Online community, helpline, and peer support groups — including for ichthyosis patients.

The most active UK ichthyosis community online. Private group — requires membership approval. Members share tips, ask questions, discuss medications, and support each other. Very welcoming to newly diagnosed.

Reddit community for people with ichthyosis. Open to all. People share photos for comparison, ask about treatments, discuss life hacks, and support newly diagnosed members. International membership.

FIRST's online forum connects patients worldwide. Type-specific discussion areas for all 11 types. Active parent forum for families with affected children. Moderated by experienced community members.

#ichthyosis has thousands of posts on TikTok and Instagram. Many people with ichthyosis share daily life, routines, and advocacy content. Particularly active for younger people. Search #xlinkedichthyosis or #lamellarichthyosis for type-specific content.

Provides free one-to-one counselling specifically for people with visible differences. Therapists understand the social, psychological, and practical challenges — unlike general IAPT services. Highly recommended by ichthyosis patients. Self-refer online.

Free CBT and counselling via NHS. Waiting times vary. Tell them your skin condition impacts your mental health — this can help get you seen sooner. Ask specifically for a therapist with chronic condition/visible difference experience.

ISG UK connects people with trained peer supporters who have ichthyosis themselves. One-to-one conversations, group meetups, and family days where you can meet others who genuinely understand.

Many people with moderate-to-severe ichthyosis qualify for Personal Independence Payment (PIP) or Child Disability Living Allowance. The time spent on skincare routines, reduced mobility in hot weather, and medical appointments are all relevant criteria. ISG UK can support applications.

Volunteer engineers who make custom equipment for disabled people — free of charge. Can create bespoke emollient applicators, cooling equipment, adapted clothing fasteners, or anything else that standard products don't cover.

People with ichthyosis who are significantly impaired in hot weather or by fatigue may qualify for a Blue Badge. The "hidden disability" criteria apply. Required documents: GP letter, specialist letter, and description of walking difficulties on bad days.