Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Without a diagnosis it can be difficult to access basic information and support. SWAN UK (syndromes without a name) is the only dedicated support network available for families of children and young adults with undiagnosed genetic conditions in the UK. It is run by the charity Genetic Alliance UK. Read more
Myositis is a rare autoimmune disease that causes muscle weakness. There are different types of the condition. Myositis UK seeks to improve the diagnosis, treatment, understanding and prognosis of myositis by providing information, relieving isolation, raising funds, and funding research. They are based in Southampton. Read more
Conductive Care provides one to one Conductive Education Sessions to children and young adults with neurological and mobility impairments, within their own home. Read more
NPUK provide practical and emotional support, advice and information to those affected by Niemann-Pick diseases and facilitate research into potential therapies.. Read more
A website patient information sharing resource Read more