Useful Resources

We are busy creating some information to show national and local care and support resources in the UK & Ireland, which we hope will be of use. We have launched our buddy system and have started to set up regional / local networks, we have also moved our screening guideline information to a new page here. Below are some links to additional resources and helplines.

Ian – Summer 2019


Gene People: 0800 987 8987
Mind:  0300 123 3393
Childline: 0800 1111
Contact: 0808 808 3555
Samaritans: 116 123
NSPCC: 0808 800 5000 / 0800 1111


British Society for Genetic Medicine: Map of Genetics Centres:
Genomics England: 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:
Young Minds: Guide to NHS Child and Adolescent Mental Health Services
Supporting Students with PHTS Leaflet, click here to view
With thanks to the PTEN Foundation for this leaflet.