Rare disease patient groups are a fundamental force in motivating, directing, and supporting research into their condition. They can also be a support network for people affected by the condition.
Please find below links to PHTS patient organisations we are aware of currently around the world.
PTEN UK and Ireland Patient Group
CoBaLD - German speaking group
PTEN Plus Facebook page
Syndrome de Bannayan Riley Ruvalcaba/Bannayan-Riley-Ruvalcaba Syndrome
The PTEN Hamartoma Tumor Syndrome Foundation was founded with a mission to educate about PTEN syndromes, provide financial support to patients, support research, and to promote awareness.
PTEN World is for people with Cowden Syndrome/BRRS and their families and medical providers. Members may support each other on their profiles and in the discussion forum.
Our Life with Autism + PTEN Mutation