Last year PTEN UK & Ireland Patient Group got 70+ PTEN patients, family members and proffessionals together in London for a day of learning, support, collaboration and looking to the future. Read a write up of the day with links to resources and presentations here: ptenuki.org/ ... See MoreSee Less

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Ellie, Sarah, David and Leo are all #raredisease warriors raising their hands for Rare Disease Day and are 4 of the 200-300 people in the UK affected by #PTEN and being supported by our charity! Find out more about our work: ptenuki.org/about-phts/ ... See MoreSee Less

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Support the PTEN Patient group and work we do to help the UK & Ireland to understand and manage the condition.