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@soheb@pkutalk.com · Mar 07, 2026
Nailed it, as usual 😏 #Phenylketonuria #PKU #phenylceotnurie #pico #blood #health #nhs
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@poconnor@pkutalk.com · Mar 06, 2026
March PKU & Brain Health Update: - Rare Disease Day equity report, - PKU research, pancake recipes, - brain injury app trials, - and a book sale ending 7th March! Share your story & support the community. https://www.pigpen.page/march-2026/ #pku #rarediseaseawareness #shareyourstory #phenylketonuria #braininjury
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@soheb@pkutalk.com · Mar 01, 2026
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
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@poconnor@pkutalk.com · Feb 27, 2026
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
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@poconnor@pkutalk.com · Jan 30, 2026
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
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