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

Social Media

Facebook Groups
PTEN UK & Ireland: www.facebook.com/groups/ptenuki.private
Cowden Syndrome: https://www.facebook.com/groups/282889951730524/
Cowdens Syndrome:  https://www.facebook.com/groups/cowdensyndrome/
BRRS: https://www.facebook.com/groups/BRRS.Bannayan.
​Riley.Ruvalcaba.Syndrome/ 

Facebook Pages
PTEN UK & Ireland: https://www.facebook.com/ptenuki/
PTEN Foundation (U.S.): https://www.facebook.com/ptenfoundation/
PTEN World: https://www.facebook.com/ptenworld/
PTEN Italia: https://www.facebook.com/Pten-Italia-414421871903180/
Beating Cowdens: https://www.facebook.com/Beating-Cowdens-135412869934692/

Twitter
PTEN UK & Ireland: https://twitter.com/ptenuki
PTEN World: https://twitter.com/ptenworld
PTEN Italia: https://twitter.com/PTENItalia

Websites

PTEN Research Foundation: https://www.ptenresearch.org/for-families/patient-resources/
PTEN Foundation (U.S.):  https://www.ptenfoundation.org/
Findacure: http://www.findacure.org.uk
Rare Disease UK: https://www.raredisease.org.uk/
Genetics Alliance: https://www.geneticalliance.org.uk/
Genetic Disorders UK: http://www.geneticdisordersuk.org/
Unique: http://www.rarechromo.org/

Helplines

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

Resources

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:
Rareminds Wellbeing Hub – Sources of support regarding rare disease and mental health:
Contact – Charity supporting families with disabled children:
Cerebra Anxiety Guide – A Guide for Parents:
Young Minds: Guide to NHS Child and Adolescent Mental Health Services
Clinical Neurologic Features and Evaluation of PTEN Hamartoma Tumor Syndrome: A Systematic Review
UKCGG Leaflets and Guidelines:
Supporting Students with PHTS Leaflet, click here to view
With thanks to the PTEN Foundation for this leaflet.
RESEARCH