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Pukpip Banana Bites Dipped In Dark Chocolate: 63g =1g protein (1 PKU exchange)

Easter Treat List (low protein) 2025 - downloadable from NSPKU website

We have had approval to start our research on this home monitoring device for blood phenylalanine for patients with PKU. Work will start very soon.

Happy Mothers Day to all our wonderful mums who work incredibly hard to keep their children safe and well and help them attain their dreams and beyond! We cannot thank you enough.

Adults with PKU face unique dining challenges. Tobias Hagedorn's #pkulifestories interview highlights the daily management required. It's more than a diet—it's constant vigilance. ️⚖️#adultpkuawareness Watch the interview: pku.at/ill6kp Like, comment and share!

We should raise awareness as many people with pku are used to using violife NSPKU

Who is ready for the NSPKU in Scotland! Lots to look forward to this weekend!

The NSPKU launched the A-Z for children (aged 4-10y) with PKU. I cannot wait to share with our children

Do you know someone making a real difference for PKU patients? 🤔 Nominate them for the Sheila Jones Award! 🏆 Patients, families, doctors, dietitians & industry – anyone can nominate! 🙌 Birmingham Children's Hospital decides the winner. Nominate: espku.org/sheila-jones-a…

The new European PKU guidelines are out!

Blood Phe testing in Brum!

Diagnosing late-onset PKU in the shadow of refractory seizures pubmed.ncbi.nlm.nih.gov/40129777/

Deep Reality (PKU Series) Part 2!!! Part 3 coming in a few days. #pku youtu.be/Oh_k2h7tBdc?si…

🌟 Celebrating International Nurses Day! 🌟 Honouring nurses, especially those supporting families with CCHS. 💙 Read Melanie Lovell-Knight's inspiring interview: rarerevolutionmagazine.com/celebrating-th… #InternationalNursesDay #CCHS #NursingHeroes #KeepMeBreathing @Keep Me Breathing

Calling all RARE Caregivers! Are you a parent or caregiver for someone living with a #RareDisease or condition? We need your stories! Email [email protected] for more information.

How much do we know about the protein content of Palm fruit NSPKU. Could be potentially useful in low protein dietss.

If you think IMDs are child’s play, think again. Adult IMD services are growing rapidly and 40% of their patients were diagnosed as adults. You won’t find rare until you think rare. #thinkmetabolic #raredisease open.spotify.com/episode/7v93Aj…

European guidelines on diagnosis and treatment of phenylketonuria: First revision pubmed.ncbi.nlm.nih.gov/40378670/

Our Secretary, Tobias Hagedorn, participated in the Eurordis Members Meeting #EMM2025 in Riga. The meeting's theme was 'Maximising our Impact.' Discussions focused on key topics related to patient advocacy, self-help, care, and political lobbying for rare diseases.

Transitioning into Adulthood with PKU: The Role of Diet, Coping Strategies, and Quality of Life in Adolescents and Young Adults mdpi.com/3339136 #mdpipsycholint via Psychology International MDPI