🔬 The latest on PKU treatment from NSPKU's October conference - and what they might mean for those living with PKU.
💊 Sepiapterin (Sephience)
🧪 JNT-517, and MZE782
🩸 At-home phe monitors
🗓️ Published on PigPen.page (Want to be the first to see my posts? Subscribe for free emails.)
🔗 https://www.pigpen.page/whats-in-the-treatment-pipeline/
#PKU #Phenylketonuria #RareDisease #InheritedMetabolicDisorders #LivingWithPKU #NSPKU
A great NSPKU conference in Cardiff yesterday. Lovely to see so many new faces, a reminder to head out beyond the usual places.
Lots of updates, new products and research coming. Just organising my thoughts and will report in the blog soon!
Autumn comfort food after a bruising workout?
Low-Protein Mac & Cheese :)
Yum!
🎁 Free to subscribe! Plus, you get a gift ebook: "PKU & Mental Health"
📬 October's newsletter looks at the turmoil in the UK pharmaceutical industry, why this matters - and what you can do.
💚 PKU news: Support NSPKU in parliament, another promising treatment in development
🧠 Brain news: Do we have a sideline test for concussion at last?!
🥘 Plus: 4 Low-protein recipes to try out
#PKU #LivingWithPKU #RareDisease #Concussion #LivingWithMildBrainInjury #TBI #PKUFood
https://www.pigpen.page/oct-2025/
A great start to the week!
The latest issue of the NSPKU News & Views popped through the door first thing.
#LivingwithPKU #PKUcommunity #PKULife #Phenylketonuria, #PKU
🆕 Tips for Managing Prescriptions and Travelling with #PKU
[https://pkutalk.com/tags/PKU]
Earlier this summer I had a great conversation with Tom and Jasmine for this new
podcast by the NSPKU.
It was full of tips for:
- dealing with GPs
- packing for PKU,
- managing protein while travelling
and just talking about how we manage our PKU "Home & Away"
Would like to know what you think of it!
#LivingWithPKU [https://pkutalk.com/tags/LivingWithPKU] #TravellingWithPKU
[https://pkutalk.com/tags/T…
🥗 Recipe ideas! Four quick ‘school-night’ dinners
Quick, easy dinners that satisfy both the PKU diet and your taste buds.Three recipes are Phe-free; the fourth has 2.5 g Phe per adult portion, with optional additions if you need more.
https://www.pigpen.page/four-quick-school-night-dinners/
#LivingWithPKU #BackToSchool #PKU #PKUFood #LowProtein #LowProteinIdeas
Catch up after the summer with curated news on PKU, brain injury, and mental health.
Monthly newsletters for subscribers.
🆓 to join, and
🎁 get the "Mental Health and PKU" ebook too!
https://www.pigpen.page/sept-2025/
#PKU #LivingWithPKU #PKULife #LivingWithMildBrainInjury #Concussion #MentalHealth
🆕 Tips for Managing Prescriptions and Travelling with #PKU
Earlier this summer I had a great conversation with Tom and Jasmine for this new podcast by the NSPKU.
It was full of tips for:
- dealing with GPs
- packing for PKU,
- managing protein while travelling
and just talking about how we manage our PKU "Home & Away"
Would like to know what you think of it!
🧒 PKU Kids Books! 🖍️ Accessible, fun, low‑protein books for PKU kids
Specially crafted for children with PKU, these books weave education and entertainment.
The Low Phe ABC Book introduces protein‑free foods in bright illustrations, and the colouring companion invites playful learning—ideal for family engagement.
“A wonderful resource” Prof. Anita MacDonald
#pku #pkukids #phenylketonuria #livingwithpku #pcu #lowproteinlife #lowphenylalanine #lowproteinliving #raresisease #books #kidsbooks
I wish more people knew about the use of food restrictions as a medical treatment.
Many see the word 'diet' or food restrictions as a lifestyle choice, to be ignored or dismissed.
In truth, many medical conditions are treated through the use of food restrictions.
You never know what someone else is dealing with, but you can choose how you react to their requests.
What do you wish people knew more about?
#LowProtein #PKU #Phenylketonuria #RareDisease #MetabolicDisorder #LivingwithPKU
Hi everyone, Just letting you know that Tonight at 6pm there is a LinkedIn Live Event Celebrating PKU Awareness Month.
All speakers either have PKU, or are a mum to PKU-ers.
I hope you will join us! https://www.linkedin.com/events/7327788292572069888/about/
Hi everyone. There is an online event with 4 speakers who have PKU, and one Mum! We are all sharing our PKU stories in creative ways (writing, film, stage...).
I hope you will join us! 23rd May @ 6pm London / 7pm Berlin
https://www.linkedin.com/events/rarecreatives-lives-storyteller7327788292572069888/theater/
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
April's update is PACKED with:
- 🐰 Easter tips,
- 🍰 ideas for school holiday baking,
- 📋 new brain injury research,
- 📝 and a chance to report on the NSPKU conference.
Sign up today and be the first to get #PKU news,
#lowprotein recipes, mental health tips in your
inbox!
#LivingWithPKU #pku #PCU #Phenylketonura
#PKUFood
(Edited to correct markdown errors)
April's update is PACKED with:
- 🐰 Easter tips,
- 🍰 ideas for school holiday baking,
- 📋 new brain injury research,
- 📝 and a chance to report on the NSPKU conference.
Sign up today and be the first to get #PKU news, #low-protein recipes, mental heatlh tips in your inbox!
#LivingWithPKU #PCU #Phenylketonura #PKUFood #RareDisease #BrainInjury #MentalHealth
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
When you use up all your protein allowance on buttered popcorn…
#LivingWithPKU #pku #LowProtein #RareDisease #pcu #Phenylketonuria
PKU-Friendly, low & no protein Easter Ideas from the team at Birmingham Children's Hospital!
#PKU #Phenylketonuria #LowProtein #LivingWithPKU #EasterIdeas #Easter
