Other Relevant Organisations
The purpose of this fund is to provide sums for research and education on Harlequin Ichthyosis. Aims will include the development of treatment options, promotion of international research collaborations to strengthen investigations into this rare condition, availability of prenatal screening tests and the dissemination of clinical best practice.
The Skin Care Campaign (SCC) is an umbrella organisation representing the interests of all people with skin disorders in 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.
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.