NORD Member

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

Latest news
Cover for PTEN UK & Ireland Patient Group
489
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

21 hours ago

PTEN UK & Ireland Patient Group
⚡ Last chance! ⚡Applications for the PTENUKI Charity Grant close tomorrow (18 October 2025).If you haven’t applied yet, now’s the time! 💙👉 Apply here: docs.google.com/forms/d/e/1FAIpQLSfq81pHsN-UcvOZLezcamspRvXiQQKvugAOSmmJMY0iIxAlcg/viewform?usp=h... ... See MoreSee Less

Photo

View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

PTEN UK & Ireland Patient Group

3 days ago

PTEN UK & Ireland Patient Group
A huge congratulations to Tyrone, Ben, Paul and Ryan, who took on the Royal Parks Half Marathon this Sunday and collectively raised over £10,000 for PTENUKI! 💙Ryan was inspired to take on this challenge after his son was diagnosed with PTEN at the end of last year and together, this amazing team has made a truly life-changing impact to those affected by PHTS. 💪Your hard work and dedication will go such a long way in helping us continue our mission to improve the lives of those living with PTEN and their families. From all of us at PTENUKI thank you so much! 💚Want to make a difference too?👉 Check out our fundraising resources on the website and find out how you can get involved: ptenuki.org/fundraising/ ... See MoreSee Less

Photo

View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

PTEN UK & Ireland Patient Group

7 days ago

PTEN UK & Ireland Patient Group
🚨 1 week left to apply! 🚨There’s still time to apply for the PTENUKI Charity Grant. We want to help as many families as possible access the essentials that make a difference.✔️ Up to £500 available per household✔️ Deadline: 18 October 2025Don’t miss out – apply here: docs.google.com/forms/d/e/1FAIpQLSfq81pHsN-UcvOZLezcamspRvXiQQKvugAOSmmJMY0iIxAlcg/viewform?usp=h... ... See MoreSee Less

Photo

View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

PTEN UK & Ireland Patient Group

2 weeks ago

PTEN UK & Ireland Patient Group
🌟 2 weeks to go! 🌟Our PTENUKI Charity Grant is open — but don’t leave it too late!💙 Grants of up to £500 are available to help with:Therapy or mobility equipmentHousehold appliancesCommunication devicesSpecialist trikes…and more!🗓️ Applications close 18 October 2025.👉 Apply today: docs.google.com/forms/d/e/1FAIpQLSfq81pHsN-UcvOZLezcamspRvXiQQKvugAOSmmJMY0iIxAlcg/viewform?usp=h... ... See MoreSee Less

Photo

View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

PTEN UK & Ireland Patient Group

3 weeks ago

PTEN UK & Ireland Patient Group
⏳ 3 weeks left to apply! ⏳Have you submitted your application yet for our new PTENUKI Charity Grant?✔️ Up to £500 available per household✔️ Open to PTEN patients, family members, or carers in the UK & Ireland✔️ Income under £50,000 per household➡️ Awards can be provided as vouchers (Amazon, Argos, etc.) or as a refund with proof of purchase.🗓️ Deadline: 18 October 2025👉 Apply here: docs.google.com/forms/d/e/1FAIpQLSfq81pHsN-UcvOZLezcamspRvXiQQKvugAOSmmJMY0iIxAlcg/viewform?usp=h... ... See MoreSee Less

Photo

View on Facebook
· Share

Share on Facebook Share on Twitter Share on Linked In Share by Email

Donate

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