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#phenylketonuria

6 posts · Last used 12d

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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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@phenylketonurianotebook@pkutalk.com · Feb 23, 2026
Je commence à m'intéresser à un aspect hors du commun que je trouve pertinent avec la #phénylcétonurie : la tentation. Ça vous intéresserait une vidéo sur le sujet? I'm starting to take an interest in an unusual aspect that I find relevant to #phenylketonuria: temptation. Would you be interested in a video on the subject?
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@phenylketonurianotebook@pkutalk.com · Feb 01, 2026
New treatment, new hope. But it is at a very early stage. 👉 https://open.substack.com/pub/pcublogue/p/un-nouveau-signal-du-cote-de-la-recherche #Phenylketonuria #Phenylcetonurie
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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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