It is often hard to find detailed information on rare diseases because they affect so few patients. Doctors may only treat a few patients with a rare disease in their whole career.
Rare Disease Groups (RDGs) are run by experts in that condition who can provide detailed information and advice on tests, treatment and research. Please contact us if you are interested in setting up a new group or if you are a patient/parent who would like to take an active part in shaping the UK research agenda for your/your child’s condition.
Please also contact us if you would like to take part in RaDaR – the rare disease registry – and we can put you in touch with the research team at your local hospital who can send you the appropriate consent forms.
Rare Disease Groups