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.

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.