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6 posts · Last used Jul 01

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poconnor
poconnor @poconnor@pkutalk.com · Jul 01, 2026
Now is your best chance to find my *entire* ebook collection FREE or 50% off @Smashwords! You can find all my books at https://www.smashwords.com/profile/view/PaulineO%27Connor #SWSale2026 #Smashwords #PKU #LivingWithPKU #RedHatStories #RareDisease #LowProtein
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poconnor
poconnor @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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poconnor
poconnor @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
poconnor @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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