News & Events

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Attending the Westminster Parliament Reception for Rare Disease Day

February 27th marked a memorable and impactful day at the Westminster Parliament Reception for Rare Disease Day, which was graciously ...

Join Our PPIE Initiative: Have Your Say in Improving PTEN care!

At PTENUKI, we believe that patients and carers should have a voice in shaping the future of healthcare. That’s why ...

PTENUKI Hosts Virtual Brush Party for Rare Disease Day

Date: Saturday, February 22, 2025 In celebration of Rare Disease Day, PTENUKI is excited to announce a virtual Brush Party ...

Book Review for Positively Rare

Positively Rare is a groundbreaking collection that goes beyond the medical aspects of rare diseases. It’s a celebration of the ...

PTENUKI Patient day 2025

We are excited to announce our 6th PTEN Patient Day! This annual event brings together PTEN patients and families for ...