#rarediseaseawareness — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #rarediseaseawareness, aggregated by home.social.
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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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🧬 Genomic testing isn’t just about data—it’s about real people, real stories, and real lives.
In my latest blog, I shared my lived experience of Sapropterin testing with NHS Staff.What would you have said?
🔗 Read more: [link in bio] or visit www.pigpen.page/lived-experiences-of-genomic-testing/
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PKU and being 'hangry'. Satiety (feeling full) can be a problem for those with PKU. Here are a few tips for those following a low-protein diet.
https://www.pigpen.page/pku-and-being-hangry/
#LivingWithPKU #PKU #PCU #Phenylketonuria #RareDisease #PKUFood #RareDiseaseAwareness #Hanger #Hungry
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PKU was discovered in 1934, but was considered untreatable for decades. Then, a team at the Birmingham Children’s Hospital took up the challenge...
#PKU #LivingWithPKU #Phenylketonuria #Birmingham #RareDisease #RareDiseaseAwareness
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Hot off the press! I've just finished reading advance copy of this new PKU book.
I thought it was a powerful and unflinching memoir interwoven with a wide-ranging social history, offering a compelling examination of motherhood, medical care, and genetic heritage through the lens of PKU.
⭐⭐⭐⭐⭐ - more at https://buff.ly/40OVbxQ
#pku #rarediseaseawareness #Phenylketonuria #raredisease #newbook #bookreview️
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It’s #RareDiseaseMonth!
This is my first year as a double rare patient — if I were a gemstone, I would be priceless ✨
Learn more about my story by watching this news feature: https://www.fox5atlanta.com/news/georgia-grad-student-defies-medical-expectations-25-years-after-devastating-diagnosis