Setting up a patient group

The story of Ian

I started the PTENUKI patient group to provide greater support and improve the lives of patients with PTEN/PHTS after my daughter was diagnosed at the age of 2 back in 2015. After having a pretty tough time of waiting 18 months for a diagnosis and being able to speak to a geneticist, I really didn’t want anyone else to have to go through what we did. The patient group continues to grow and I’m really proud of what the trustee team has been able to do and provide over the last 6-7 years. PTENUKI offers hope, positivity, useful information and the opportunity to meet other people affected by PTEN. Please reach out if you are in need of support –