Other charities and organisations offering support you may find helpful.

Ichthyosis Support Group on Facebook
Join us on Facebook

European Network for Ichthyosis

The European Network for Ichthyosis (eni) is an international patients network run by national European patients associations.  eni is a common voice for ichthyosis patients and a partner for authorities on a European level.

Friends of Ichthyosis

Another UK based site for sufferers and for those affected by the rare skin disorder Ichthyosis. Information about the condition, links to external sites and an online community.

Foundation for Ichthyosis and Related Skin Types (FIRST)

US based support group for ichthyosis

Ichthyosis Information Forum based in the US

This site strives to improve the ichthyosis community’s resources, raise awareness and support, and provide an easy-access meeting place.

SHHIRT The Harlequin Ichthyosis Charity

The Samuel Hardgrave Harlequin Ichthyosis Research Trust (SHHIRT) is a UK registered charity dedicated  to researching Harlequin Ichthyosis, and helping those affected by it.

Contact

Contact, formerly Contact a Family is a UK-wide charity providing support, advice and information for families with disabled children.

Changing Faces

Changing Faces is a UK charity that supports and represents people who have visible differences and disfigurements of the face or body from any cause including skin conditions.

Eurordis

Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.

British Skin Foundation

The British Skin Foundation (BSF) is the only UK charity dedicated to skin disease research. Their aim is simple – to raise money for research projects that will hopefully result in cures or at the very least, a better understanding of the numerous skin conditions that affect millions of lives in the UK.

British Association of Dermatologists

The British Association of Dermatologists is the professional organisation for Consultant, Trainee and Staff and Associate Specialist dermatologists in the UK and Eire.

Established in 1920, it is a registered charity with an incorporated body of trustees, the Executive Committee, who are all dermatologists elected by the membership. The Officers, supported by the professional staff carry out the day to day business from Willan House, the headquarters building in central London.

British Dermatological Nursing Group (BDNG)

The British Dermatological Nursing Group (BDNG) was established in 1989 to offer an independent speciality group of nurses and healthcare professionals with an interest in dermatology.

Primary Care Dermatological Society UK (PCDS)

The Primary Care Dermatology Society (PCDS) is the leading society for all members of the primary healthcare team with an enthusiasm for dermatology and skin surgery with over 4500 members across the UK

Rare Disease UK

It is a joint initiative of Genetic Alliance UK (see below) and others in response to unmet health care needs of hundreds and thousands of families who currently struggle to get access to integrated care and support from the NHS.

Genetic Disorders UK

Providing support and information to individuals and organisations affected by all genetic conditions.

Jeans for Genes

The UK children's charity that aims to change the world for children with genetic disorders.

Genetic Alliance UK

Genetic Alliance UK is the national alliance of patient organisations with a membership of over 130 charities supporting all those affected by genetic disorders.

Specialised Healthcare Alliance 

The Specialised Healthcare Alliance (SHCA) is a broad coalition of patient groups supported by a smaller number of corporate members. SHCA was established in 2003 to campaign on behalf of people with rare diseases and other complex conditions which require specialised medical care.

Action Medical Research

Action Medical Research, for children, for life - the leading UK-wide medical research charity dedicated to helping babies and children.

Nutritionist Resource

Search for a nutritionist near you. If you're in need of support, search their network to be connected with a professional nutritionist.

Counselling Directory
A site providing the UK with a huge counselling support network, enabling those in distress to find a counsellor close to them and appropriate for their needs.

WaterSure Scheme

WaterSure is a scheme which helps people on some benefits on a water meter (or waiting to have one installed) with their water bills.

Pharmaceutical and Medical Device Companies

Some of the pharmaceutical and medical device companies that manufacture products that may be used in the treatment of ichthyosis.

The Ichthyosis Support Group’s core funding has in part been or is supported by the following companies:

  • Galderma (UK) Ltd
  • Stiefel, a GSK company

The following companies in part support our ongoing activities and/or our annual events:

  • Alliance Pharma plc
  • Beiersdorf UK Ltd
  • CliniSupplies Ltd
  • Crawford Healthcare Ltd
  • Dermal Laboratories Ltd
  • Galderma (UK) Ltd
  • M & A Pharmachem Ltd
  • Mölnlycke Health Care Limited
  • Synergy Healthcare plc
  • T&R Derma

Some of the companies who manufacture and/or supply products used in the treatment of ichthyosis can be found below:

  • Alliance Pharma plc
  • Almirall
  • Beiersdorf UK Ltd
  • Crawford Healthcare Ltd
  • Dermal Laboratories Ltd
  • Galderma (UK) Ltd
  • M & A Pharmachem Ltd
  • Mölnlycke Health Care Limited
  • Pierre Fabre Limited
  • T&R Derma

For details of companies who supply garments and bandaging used in wet and dry wrapping of dry skin conditions please see below.

  • CliniSupplies Ltd
  • DreamSkin Health
  • Espere Healthcare Ltd
  • Molnlycke Health Care Ltd
  • Skinnies UK
  • Synergy Health