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

1 week 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 week 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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PTEN UK & Ireland Patient Group

1 week ago

PTEN UK & Ireland Patient Group
🌟 Why Funding Rare Disease Charities Matters 🌟1 in 17 people will be affected by a rare disease in their lifetime—but many of these conditions like PTEN have little to no treatment available. Rare disease charities provide critical research, support, and hope to families facing the unknown.💙 Without funding, breakthroughs don’t happen.💙 Without awareness, families struggle alone.💙 Every donation, big or small, brings us closer to answers.Watch our video to see why your support means everything. Together, we can make a difference! 💪💜You can fundraise for us, check out our fundraising toolkit here: ptenuki.org/fundraising-ideas/ or you can donate through our PayPal: www.paypal.com/gb/fundraiser/charity/3616399 #PTENUKI ... See MoreSee Less

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PTEN UK & Ireland Patient Group

2 weeks ago

PTEN UK & Ireland Patient Group
We’re thrilled to announce that Sublime Science will be bringing their amazing, hands-on experiments to entertain the children at PTENUKI Patient Day 2025! 🎉🔬Expect fizzing potions, incredible science tricks, and plenty of fun for the little ones while we connect, learn, and support one another. 🌟 You can find out more about Sublime Science on their website here: www.sublimescience.com/l-kids-birthday-party/?gad_source=1&gclid=CjwKCAjw47i_BhBTEiwAaJfPpoqOkJpa... If you haven’t signed up yet, don’t miss out—register now! 👉 ptenuki.org/ptenuki-patient-day-2025/#PTENUKI ... 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.