Care & Support

We are busy creating some information to show national and local care and support resources in the UK & Ireland which may be of use. We are also trying to build a buddy system and setup regional networks. These things take time, especially when it’s all done voluntarily in people’s spare time. Please bear with us whilst we get our act together. In the meantime, please see some useful links below.

Ian – Autumn 2017




British Society for Genetic Medicine: Map of Genetics Centres:
Nottingham University Hospital: Talking to children about genetic conditions:
Unique: After Diagnosis (a guide aimed at parents with children under 5):
Rare Disease UK: Living with a rare or undiagnosed condition – The emotional impact and effect on mental health:
Information on NHS Genetic Counselling services:
Mind: How to Cope when supporting someone else:
FIND: Further Inform Neurogenetic Disorders:
Cerebra Anxiety Guide – A Guide for Parents: