Umbrella Groups

This section includes links to a number of umbrella organisations that provide general information, advocacy and support for a wide spectrum of genetic conditions – including many of the disorders covered by Jnetics.

These groups may be particularly useful for conditions that have no dedicated patient group themselves e.g. Canavan disease and Bloom syndrome.

CLIMB – Children Living with Inherited Metabolic Diseases (UK) 

CLIMB is a national organisation working on behalf of children, young people and families affected by inherited metabolic diseases. It covers 730 inherited disorders, providing information and support and funding education and research programmes.

Contact a family

This established UK-wide charity provides advice, information and support services to the parents of all disabled children. The site includes information on over 1200 disabilities and conditions, links to support groups, database for networking other families, and service details.

Genetic Alliance UK

Genetic Alliance UK, previously the Genetics Interest Group (GIG), is a national charity of over 130 patient organisations that seeks to improve the lives of all people affected by genetic conditions. It promotes awareness and understanding of genetic disorders and actively campaigns for high quality services to be developed and made available to all who need them.

Genetic Disorders UK

Genetic Disorders UK is a charity that provides advice and support for individuals and families affected by genetic disorders.

Jeans for Genes

A UK-based children’s charity dedicated to raising funds to provide care for those affected by genetic disorders, and to support ongoing research. The site provides details of their extensive activities and has a good information section to help people understand genetic disorders.