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.

Who qualifies: Adults (16+) with significant daily living or mobility difficulties due to ichthyosis. Two components: Daily Living and Mobility (each has standard or enhanced rate).

Ichthyosis-specific points:

• Time spent bathing/moisturising (90+ min daily for severe forms)
• Pain when walking (fissures, contractures)
• Inability to use hands (thick palmar keratoderma)
• Need for prompting or supervision due to mental health impact

Tip: Keep a daily diary for 2 weeks before applying — log time, pain levels, help needed. Include photos of scale/fissures. Get supporting letter from dermatologist.

Who qualifies: Children under 16 with care or mobility needs due to ichthyosis. Two components: Care and Mobility.

Ichthyosis-specific points:

• Supervision during baths (risk of blistering, infection)
• Extra care compared to same-age peers (help with moisturising, dressing)
• Night-time care (rewrapping, eye drops for ectropion)
• Mobility difficulties (painful fissures, heat intolerance limiting outdoor activity)

Tip: Focus on additional care needs compared to children without ichthyosis. "My child takes 90 minutes morning + evening vs. 10 minutes for typical peer."

Who qualifies: People unable to work due to illness/disability. Rare for mild ichthyosis, but moderate-severe forms (especially with pain, infection, mental health impact) may qualify.

Assessment focuses on functional impairment. Severe EI with chronic pain/infections, or lamellar with heat intolerance limiting work environments, may meet criteria.

Who qualifies: Anyone providing 35+ hours weekly care for someone receiving PIP Daily Living (standard or enhanced) or DLA (middle or highest care rate).

Parents of children with moderate-severe ichthyosis often qualify. £81.90/week (2024/25 rate). Can be claimed alongside Child Benefit.

Who qualifies: People who cannot walk or have severe difficulty walking due to a physical condition. Painful fissures, contractures, or severe palmoplantar keratoderma may qualify.

Apply via local council. Requires medical evidence (GP or dermatologist letter). Automatic if receiving higher-rate DLA mobility or PIP enhanced mobility.

Who qualifies: Children with special educational needs requiring additional support at school. Moderate-severe ichthyosis affecting school participation (frequent absences, pain, heat intolerance, time off for appointments).

EHCP legally requires school to provide: access to moisturising facilities, modified PE, cooling provisions, nurse support for wound care, exam access arrangements.

Foundation for Ichthyosis & Related Skin Types offers scholarships for students with ichthyosis pursuing higher education (college/university). Open to US residents; some international students eligible.

Awards range $1,000–$5,000. Application opens annually (typically January–March).

UK students in higher education with a disability (including ichthyosis affecting studies) can apply for DSA to cover additional costs: specialist equipment, assistive technology, travel costs for medical appointments, note-takers.

Does not need to be repaid. Apply via Student Finance.

Various UK charities offer disability scholarships not specific to ichthyosis but open to applicants with chronic conditions:

• Snowdon Trust (postgraduate)
• Saphire Foundation
• Turn2us Grants Search (multiple)

Eucerin (Beiersdorf) offers free product samples for people with chronic skin conditions via healthcare professionals. Contact via dermatology departments or write directly to Beiersdorf UK explaining condition and need.

Products: Eucerin UreaRepair range (urea 5–30%), Aquaphor ointment.

CeraVe (L'Oréal) occasionally provides product donations for patients with medical need. Contact via dermatology clinics or patient advocacy groups (FIRST can sometimes facilitate).

La Roche-Posay Foundation supports patients with skin conditions. Contact via dermatology departments for product donations (Lipikar range — urea-based emollients).

Ego Pharmaceuticals (maker of QV range) occasionally provides product support for Australians with chronic skin conditions. Contact via dermatology clinics or Debra Australia.

Ichthyosis Support Group UK occasionally receives donated skincare products (emollients, bath additives) from pharmaceutical companies. Available to members in financial hardship. Contact ISG UK directly.

You are protected. Ichthyosis is a disability under the Equality Act 2010 if it has a "substantial and long-term adverse effect" on daily activities. Employers must make "reasonable adjustments."

Examples of reasonable adjustments:

• Access to private bathroom for moisturising (15-min breaks 2–3× daily)
• Air-conditioned workspace (essential for lamellar/harlequin — heat intolerance)
• Flexible start times (morning skincare routine takes 60+ min)
• Work from home options during flare-ups or after dermatology appointments
• Modified uniform (breathable cotton rather than synthetic)

If refused: Contact Acas (free conciliation service) or seek legal advice. Discrimination is unlawful.

UK government scheme providing funding for workplace adjustments disabled employees or self-employed people need. Can cover:

• Travel to work (if cannot use public transport due to skin pain/infections)
• Specialist equipment (ergonomic tools if contractures affect hand function)
• Support worker costs
• Adaptations to premises (air conditioning installation if heat intolerance)

Employer does not pay — Access to Work pays directly. Up to £66,000/year for eligible costs.

If ichthyosis flare-up, infection, or treatment side-effects prevent work, GP can issue fit note. Specify "may be fit for work with adjustments" rather than blanket "unfit" where appropriate (keeps employment).

Statutory Sick Pay (SSP): £116.75/week for up to 28 weeks (2024/25). Longer-term absence → consider ESA application.

Up to £30,000 (England) for essential home adaptations. Available for owner-occupiers, private/social tenants. Means-tested (but children's applications are not).

Ichthyosis-relevant adaptations:

• Walk-in shower or accessible bath (for long daily soaks)
• Bathroom widening (more space for equipment, carers)
• Non-slip flooring (safety with emollient-covered floors)
• Heating/ventilation improvements (temperature regulation critical for lamellar)
• Air conditioning installation (heat intolerance in severe forms — argue medical necessity)

Process: Contact local council occupational therapy team → assessment → grant application. Takes 3–6 months typically.

For lamellar, harlequin, or bathing suit ichthyosis (anhidrosis → heat intolerance), air conditioning is not a luxury — it's medically necessary. Can be funded via:

• DFG (above) — argue medical necessity with dermatologist letter
• Charitable grants (Family Fund, Turn2us)
• Local authority social care budget (via occupational therapy)

Get consultant dermatologist letter stating: "Patient has anhidrosis due to [type]. Heat intolerance is life-threatening. Air conditioning is medically essential."

UK charity providing grants to families raising disabled/seriously ill children (aged 0–17). Can fund: white goods, sensory equipment, family breaks, car adaptations, tablets/computers, essential household items.

Families must be receiving DLA or PIP for the child, and have income <£30,000 (approx). Grants typically £200–£500; cooling equipment may qualify.

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.