NORD Member

PTENUKI is a member of the National Organization for Rare Disorders (NORD) network. 

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PTEN UK & Ireland Patient Group

PTEN UK & Ireland Patient Group

PTENUKI is a patient group which aims to help and support patients, carers, families affected by PTEN

PTEN UK & Ireland Patient Group

4 days ago

PTEN UK & Ireland Patient Group
🗓️ The agenda for PTENUKI Patient Day 2025 is now live!Join us on Saturday 22nd June at the Sense TouchBase Pears, Selly Oak, Birmingham for a day filled with expert talks, community connections, and tailored breakout sessions for adults, teens, and parents.💬 Sessions include:Clinical updates from UK specialistsMental health and wellbeingLiving with PTEN: personal storiesResearch opportunitiesEHCP supportWhether you're newly diagnosed or have been part of the community for years, there’s something for everyone.🔗 Full agenda & how to sign up: ptenuki.org/ptenuki-patient-day-2025/Let us know if you’re coming — we can't wait to see you there! 💙#PTENUKI #PatientDay2025 #PTENCommunity #RareDiseaseSupport ... See MoreSee Less

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PTEN UK & Ireland Patient Group

1 month ago

PTEN UK & Ireland Patient Group
🌟 We need YOU! 🌟At PTENUKI, we believe in the power of shared stories — they educate, inspire, and remind us we’re not alone 💛We’re looking for patients, carers, and family members who are open to sharing their PTEN journey, either at our Patient Day this June or online through our social media and website.Whether you're living with a PTEN condition or supporting someone who is, your story could make a real difference to others in our community 💬If you’re interested in getting involved, please contact Ellie at ellie@ptenuki.org to arrange 💌 ... See MoreSee Less
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PTEN UK & Ireland Patient Group

1 month ago

PTEN UK & Ireland Patient Group
🎉 A HUGE shout out and heartfelt THANK YOU to the incredible Sandy Barnett! 🎉Last month, Sandy took on the Bournemouth Bay to Bay Half Marathon and absolutely smashed it, raising nearly £1,400 for PTENUKI — smashing through his original target of £1,000! 💥🏃‍♂️💛We are beyond grateful for Sandy’s dedication and support. Fundraisers like him make a real difference to our small but mighty community, helping us continue providing vital support and resources to those affected by PTEN conditions. 🌍💬💫 Inspired by Sandy’s efforts? If you’d like to raise money for PTENUKI, check out our fundraising toolkit to get started you can still donate to Sandy's page too! 👉 www.justgiving.com/page/sandy-barnett-2 ... 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.