Support Resources

The UK's leading patient charity for people with ichthyosis and their families. Provides helpline support, family events, a nurse helpline, specialist finder database, and school information packs. Funded by donations.

Helpline: 0800 368 9621 (freephone, Mon–Fri)

Premier US patient organisation. Provides the most comprehensive US specialist finder, funds research, runs annual family conferences, and advocates for people with all forms of ichthyosis.

Supports Australians living with rare inherited skin conditions including ichthyosis. Specialist referral guidance, family support, and links to Australian research centres.

European umbrella organisation connecting national ichthyosis patient groups. Advocacy for access to trials, cross-border care, and EU rare disease policy. Connects patients in 20+ European countries.

National alliance of rare disease patient groups. Policy advocacy, research funding guidance, and access to a database of all UK rare disease charities and NHS services. Useful for navigating rare disease NHS services.

Private moderated Facebook community run by ISG UK. Patients, parents, and carers sharing tips, experiences, and support. One of the most active ichthyosis communities online. Requires group membership request.

FIRST's online community platform for patients and families. Discussion forums organised by type, age group, and topic. Annual family conference creates strong ongoing connections.

Active Reddit community with thousands of members. Peer-to-peer support, product recommendations, and life experience sharing. Moderated by community members. More informal than charity-run groups.

A growing community of people with ichthyosis sharing their daily routines, tips, and experiences on TikTok and YouTube. Useful for visual learning of skincare techniques and reducing isolation. Search #ichthyosis on each platform.

UK charity supporting people with conditions that affect appearance. Provides one-to-one psychosocial support, CBT-based programmes for managing appearance-related anxiety, and resources for building confidence. Highly recommended for ichthyosis patients struggling with body image.

NHS Improving Access to Psychological Therapies. You can self-refer for CBT and other therapies without a GP referral. Waiting times vary. Particularly helpful for anxiety, depression, and appearance-related distress associated with ichthyosis.

ISG UK trains volunteer peer supporters — people with ichthyosis who can listen and share their experiences. Often more helpful than professional counselling for condition-specific emotional challenges. Contact ISG to be matched with a peer supporter.

British Skin Foundation's online support service. Peer volunteers with personal experience of skin conditions — including ichthyosis — available to chat online or by phone. Friendly, accessible, and condition-informed.

Tubular bandages used for wet wrap therapy — worn over emollient to increase absorption and maintain moisture. Available on NHS prescription for moderate-severe ichthyosis. Ask your dermatology nurse or GP.

Phase-change cooling vests maintain a stable temperature, providing cooling for hours without needing ice. Essential for people with lamellar, harlequin, or bathing suit ichthyosis in hot weather. Brands: Polar Products, Arctic Heat.

REMAP is a UK charity of volunteer engineers who build custom adaptive equipment for disabled people — free of charge. If dexterity or mobility is affected by ichthyosis (contractures, painful hands), they may be able to make a custom emollient applicator or adaptive tool.

Essential for PIBIDS and other photosensitive types. UPF50+ rated clothing blocks 98% of UV. Brands with good range: Coolibar (US), Sun Precautions (US), Solbari (AU). Some can be obtained on medical grounds in the UK — ask your dermatologist.

People with severe mobility difficulties due to ichthyosis (painful fissures, contractures) may qualify for a Blue Badge. Apply via your local council. Medical evidence from your dermatologist or GP will be needed.

Personal Independence Payment (adults) and Disability Living Allowance (children) are available for people with ichthyosis whose daily activities are significantly affected. Citizens Advice and ISG UK can help with applications.

Authoritative database of genetic disorders. Detailed gene information, molecular pathology, and literature references for every type of ichthyosis. Written for medical professionals but searchable by condition name. Free access.

European database of rare diseases. Patient-friendly disease descriptions, diagnostic criteria, specialist centres, and research registries. Comprehensive information on all rare ichthyosis types in accessible language.

Free, evidence-based patient information leaflets on all major skin conditions from the British Association of Dermatologists. Useful for sharing with employers, schools, or GP surgeries.

US National Library of Medicine database of registered clinical trials worldwide. Search for "ichthyosis" to find open trials recruiting patients. Updated in real time. See our dedicated Clinical Trials page for curated trial listings.