Other charities and organisations offering support you may find helpful.
Ichthyosis Support Group on Facebook
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Ichthyosis Support Group on Instagram
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Ichthyosis Support Group on LinkedIn
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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.
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.
Fightback4Justice is an award winning, non-profit organisation, providing specialised, expert advice and help on various welfare benefit claims; from advocacy and representation at court to guidance with forms for PIP, ESA, DLA & UC. Some charges and subscription may apply. If you need support and advice please also contact the ISG because we can also put you in touch with another member with in depth knowledge and experience of the process.
Turn2us is a national charity offering information and practical help to people facing financial insecurity.
Use their free Benefits Calculator and Grants Search to find out what help you can get. They offer a range of guidance including a Benefits Calculator, Grants Search, Turn2us PIP Helper, Information for your situation, Information about benefits and Turn2us Grants Programmes
Contact, formerly Contact a Family is a UK-wide charity providing support, advice and information for families with disabled children.
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.
Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.
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
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.
Providing support and information to individuals and organisations affected by all genetic conditions.
The UK children’s charity that aims to change the world for children with genetic disorders.
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, for children, for life – the leading UK-wide medical research charity dedicated to helping babies and children.
Search for a nutritionist near you. If you’re in need of support, search their network to be connected with a professional nutritionist.
Counselling DirectoryA 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 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:
The following brands in part support our ongoing activities and/or our annual events:
- Hydromol
- Eucerin
- Dermol
- QV Skincare
- CeraVe
- Epaderm
- Epimax
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
- Ego Pharmaceuticals
- Derma UK Ltd
- Dermal Laboratories Ltd
- Fontus Health Ltd
- Galderma (UK) Ltd
- L’Oréal UK 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
