Category Archives: News

PTENUKI – new Chair of trustees

We are delighted to announce our new Chair of trustees, Jack Donnelly. Jack is from Coventry and approached the charity at the beginning of 2023 after his daughter Amara was diagnosed with the PTEN gene mutation at the age of 2. Jack felt strongly that after learning of Amara’s diagnosis it became apparent that there was a lack of […]

Patient Group PTENUKI reflects on achievements on its third rare disease day

PTENUKI: making connections First established in 2016, PTENUKI is making great strides to help patients and carers affected by PTEN. Now with a network of over 200 members, a significant proportion of the estimated 300 PTEN patients in the UK, PTENUKI is proud to announce its new Buddy Scheme. The Buddy Scheme will match up […]

Website Launch – Nov 2017

We’re delighted to have launched our new website for patients and families affected by PTEN / PHTS. It’s a fairly minimal launch to start with which is intentional, we would rather get smaller amounts of information published more quickly than hold anything back. We have included some introductory information on what the patient group is aiming to […]