On Sunday 29th June 2025, our PTEN UK & Ireland community gathered in Birmingham for a day filled with learning, connection, and support at the annual PTENUKI Patient Day. Held at the welcoming and accessible Sense TouchBase Pears venue in Selly Oak, the event brought together families, patients, carers, clinicians, and researchers — all united by a shared journey with PTEN Hamartoma Tumour Syndrome.
We are deeply grateful to our generous sponsors — the Baily Thomas Charitable Fund and Pharming — whose support made this important day possible.
A Celebration of Community
From the moment the day began, there was a strong feeling of community. For many, it was their first time meeting others who truly “get it.” Parents connected over shared experiences, carers exchanged practical advice, and patients of all ages found a safe space to be heard and supported.
The heart of the day was simple but powerful: we are stronger together.
Inspiring Talks and Medical Insights
We were delighted to host presentations from the PTEN Research Foundation and other leading clinical experts offering important updates on current research, global collaboration, and progress in understanding this complex condition. You can catch up on these talks here: https://youtu.be/D9IMYesJhsc
In the afternoon, breakout sessions with medical professionals gave attendees the chance to explore key areas in greater detail, including:
- How PHTS affects the immune system
- Understanding thyroid-related concerns
- Managing skin and dermatological issues
We also had expert-led sessions from Talking SENse!, offering practical advice and support around EHCPs (Education, Health and Care Plans), and a dedicated breakout showcasing the PTEN counselling service with Rareminds — an invaluable resource for emotional and mental health support tailored to our community.
These sessions were informative, interactive, and deeply appreciated by those attending — especially for the opportunity to ask personal questions in a supportive, expert-led setting.
Fun for the Whole Family
Of course, no PTENUKI Patient Day would be complete without looking after our younger attendees too. This year, we were thrilled to welcome Sublime Science, who put on an exciting and educational children’s entertainment programme — full of interactive experiments, laughter, and wonder. It gave parents the chance to fully engage with talks while knowing their children were safe, engaged, and having a brilliant time.
Food, Friendship, and a Beautiful Setting
Lunch was a chance for everyone to come together informally over a delicious buffet, catered with all dietary needs in mind. Whether catching up with old friends or making new connections, the lunchtime conversations were as valuable as the talks themselves.
The Sense TouchBase Pears venue was the perfect backdrop — inclusive, family-friendly, and thoughtfully designed with features like a sensory garden, accessible toilets, and a child-friendly layout. Its proximity to Selly Oak station and free onsite parking made it easy to reach, and many families benefitted from our travel bursary, helping to remove financial barriers to attending.
Thank You for Being Part of It
As the day came to a close, what stood out most was the shared strength in the room. This event wasn’t just about information — it was about connection. About knowing you’re not alone. About sharing stories, challenges, triumphs, and hopes for the future.
We want to thank every person who attended, supported, presented, and volunteered. You made this day unforgettable.
If you’d like to share your own reflections or photos from the day, we’d love to hear from you. Please email kelly@ptenuki.org, or @ one of our channels on social media.
