WHERE CAN I FIND OUT MORE ABOUT MY CONDITION?

Patients tell us that one of the hardest things about having a rare condition is that often their doctor may not have much information about the condition. We have answered a number of key questions about finding information and support.

Additionally our parent organisation Genetic Alliance UK can point you in the direction of patient groups with more information, or help you search for medical literature alone. Please note that they are not medically trained (and so cannot offer you medical advice about your condition, or the management and treatment of it).