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#pku

6 posts · Last used Jul 01

Soheb @soheb@pkutalk.com
· 7mo ago
To all PKU folks - Share your story! @poconnor@pkutalk.com has got some great PKU stories on her blog - one from yours truly 🧐 - and you can add your story into the mix as well! Visit this link to find out more: https://www.pigpen.page/share-your-story-2/ #phenylketonuria #phenylcetonurie #pku #pcu #lowprotein
Your Story matters - Share your experience with PKU, rare conditions
PigPen | Pauline O'Connor

Your Story matters - Share your experience with PKU, rare conditions

I believe that every story matters. If you’d like to share your experience — whether funny, heartfelt, or practical — on my blog, please get in touch

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poconnor @poconnor@pkutalk.com
· 7mo ago
Your Story Matters! For Rare disease day, people with PKU are sharing their story. 👧 Clair discusses parenting with PKU, when your child does not have PKU - and the interesting challenges she has faced. 🍫 Ifan shares his experience navigating the manosphere, and what that meant for his PKU and mental health. 📦️ Soheb wrote a series of blogs for PigPen - looking at moving home with PKU, and getting into the gym. https://www.pigpen.page/share-your-story-2/ #ShareYourStory #PKU #RareDiseaseDay #RareAware
Your Story matters - Share your experience with PKU, rare conditions
PigPen | Pauline O'Connor

Your Story matters - Share your experience with PKU, rare conditions

I believe that every story matters. If you’d like to share your experience — whether funny, heartfelt, or practical — on my blog, please get in touch

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poconnor @poconnor@pkutalk.com
· 8mo ago
Monthly email on PKU, Brain, and Mental Health: 🆓 A free workshop on Living with PKU 💊 Genetic medicine, personalised treatments, and PKU 🧠 Campaigning for change in strokes and brain injury support and 💉 What is the PKU injection (Palynziq)? https://www.pigpen.page/february-2026/ #PKU #LivingwithPKU #Phenylketonuria #Palynziq #BrainHealth #BrainInjury #Stroke #NHS
News February 2026 PKU, brain injury, rare disease, low protein
PigPen | Pauline O'Connor

News February 2026 PKU, brain injury, rare disease, low protein

A free workshop on Living with PKU; Genetic medicine, personalised treatments, and PKU; Campaigning for change in strokes and brain injury support; and What is the PKU injection (Palynziq)?

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