NSPKU (@NSPKU) header
NSPKU (@NSPKU) profile picture

NSPKU

@NSPKU

The NSPKU exists to help and support people with PKU, their families and carers. It was formed in 1973, see https://xitter.cf/t.co/f9QHejwhkW

 UK
nspku.org
Joined April 2013
  • Tweets56.3K
  • Following1.4K
  • Followers3K
6.6KMedia
Photo by NSPKU (@NSPKU)Photo by NSPKU (@NSPKU)Photo by NSPKU (@NSPKU)Photo by NSPKU (@NSPKU)Photo by NSPKU (@NSPKU)Photo by NSPKU (@NSPKU)Photo by NSPKU (@NSPKU)Photo by NSPKU (@NSPKU)Photo by NSPKU (@NSPKU)Photo by NSPKU (@NSPKU)
Patients met professionals. Many interesting questions and answers. #espkuconference2026 #40Conferences1Community
Image from ESPKU (@official_espku)
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We are after the fist session of the Conference. PKU in Denmark, Maternal PKU, gut microbiome and brain, maternal PKU and children outcomes were discussed. #ESPKUConference2026 #40ConferencesOneCommunity
Image from ESPKU (@official_espku)
Image from ESPKU (@official_espku)
Image from ESPKU (@official_espku)
Image from ESPKU (@official_espku)
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This is the moment I reached the height of Everest on my Blencathra Challenge. 14 times up & down. It hurt @NSPKU
Image from Ian Spriggs (@IanSpriggs4900)
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On behalf of myself & NSPKU Huge thanks to you all. Amazing achievement @NSPKU @WHS_Brampton @CE_Trust
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🍰 Something delicious has just landed! 💚 We’re delighted to announce that our NEW Promin Low Protein Cake Mixes Recipe Booklet is now available to download from our website! 🎉 📖 Available to download on our web-site - prominpku.com/3d-flip-book/c… #MadeWithPromin #lowproteindiet
🤖 Made with AI
Image from Promin Metabolics (@ProminMetabolic)
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We loved meeting those of you who came to find us at @NSPKU and we hope you took away some ideas on how to best manage you or your loved ones’ PKU. We’d love to hear your thoughts on what was great about the event in the comments below. #Nutricia #LowPro #LowProtein #PKU
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🍫 Happy World Chocolate Day! 🍫 Today we're celebrating all things chocolate with a delicious range of low protein treats from Promin, metaX and Taranis! 🤎 Because everyone deserves to enjoy the taste of chocolate. ❤️ #MadeWithPromin #lowproteindiet #lowprotein #PKU
🤖 Made with AI
Image from Promin Metabolics (@ProminMetabolic)
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Living with phenylketonuria in adulthood pubmed.ncbi.nlm.nih.gov/4233…
Living with phenylketonuria in adulthood - PubMed

Living with phenylketonuria in adulthood - PubMed

PKU and its dietary treatment may affect adults with PKU, particularly in mental health related domains.

pubmed.ncbi.nlm.nih.gov
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Wirral children with rare condition join MP as town hall is lit up green ift.tt/REkG81Y
Wirral children with rare condition join MP as town hall is lit up green

Wirral children with rare condition join MP as town hall is lit up green

FAMILIES from across Wirral gathered outside town hall as the windows were lit up green to raise awareness of a rare genetic disorder.

wirralglobe.co.uk
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Are you a female aged 16-21 years old? We are in need of two control participants for the PKU S.P.O.R.T study. If you are interested or want further information please reach out or email me: Annabelle.Skidmore@mail.bcu.ac.uk Please share and repost, thank you!
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Replying to @NSPKU
@NSPKU
Wirral Globe (@WirralGlobeNews) profile pictureWirral Globe@WirralGlobeNewsJul 2
Wirral children with rare condition join MP as town hall is lit up green ift.tt/REkG81Y
Wirral children with rare condition join MP as town hall is lit up green

Wirral children with rare condition join MP as town hall is lit up green

FAMILIES from across Wirral gathered outside town hall as the windows were lit up green to raise awareness of a rare genetic disorder.

wirralglobe.co.uk
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🎂🦒 Our latest bespoke low protein birthday cake was specially created for a very special 1-year-old using Promin Low Protein Cake Mix! Because every milestone deserves a delicious celebration. 💚 Happy Birthday, Harper!🥳 Learn more: prominpku.com/promin-low-pro… #MadeWithPromin
Image from Promin Metabolics (@ProminMetabolic)
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Blood Phenylalanine Control in Paediatric and Adult Centres in the UK: Data from 2012–2018 mdpi.com/3949896 #mdpinutrients via @Nutrients_MDPI
Blood Phenylalanine Control in Paediatric and Adult Centres in the UK: Data from 2012–2018

Blood Phenylalanine Control in Paediatric and Adult Centres in the UK: Data from 2012–2018

Background: Metabolic control in phenylketonuria (PKU) is known to deteriorate with age, but national-level data describing blood phenylalanine (Phe) control across the United Kingdom (UK) are...

mdpi.com
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NSPKU retweeted
BIMDG (@BIMDG) profile picture
BIMDG@BIMDGJun 30
Next up - a double dip on PKU therapy following the Maggie Lilburn lecture, as Dr Martina Tosi presents Heterogeneity in Sapropterin Administration Among Paediatric/Adult Patients with Phenylketonuria: Findings from a National Survey @NSPKU
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Thank you for celebrating #IPKUDAY2026 We celebrated, raise awareness, met with politicians. Industry reaffirmed their dedication to work for the benefit of ppl with #PKU
🤖 Made with AI
Image from ESPKU (@official_espku)
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Meet our latest Promin Low Protein Bespoke Cake specially created for Celia to help celebrate her birthday in style. Happy Birthday, Celia!🎂 Find out more about our bespoke cake service at prominpku.com/promin-low-pro… 🎉 #MadeWithPromin #lowproteindiet #lowprotein #PKU
Image from Promin Metabolics (@ProminMetabolic)
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NSPKU retweeted
BIMDG (@BIMDG) profile picture
BIMDG@BIMDGJun 30
Replying to @BIMDG @NSPKU
Lots of interest in the Q&A following Anita's presentation around the impact of Sepiapterin on patients (beyond the orange poo!). Sepiapterin is not currently approved for use in the UK and is currently under consideration: nice.org.uk/guidance/awaitin…
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NSPKU retweeted
BIMDG (@BIMDG) profile picture
BIMDG@BIMDGJun 30
Next up, Anita MacDonald presents the Maggie Lilburn Lecture - Shaping the Future of PKU: A Lifetime Advancing Science, Care, and Community Anita reflects on Maggie's legacy but looks to the future of PKU and the promise of new therapies and interventions.
Image from BIMDG (@BIMDG)
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NSPKU retweeted
BIMDG (@BIMDG) profile picture
BIMDG@BIMDGJun 30
Anita illustrates old letters from the News and Views section of @NSPKU newsletter, where patients wrote to Maggie about their struggles off diet and celebrated their improvements on diet.
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Replying to @macdonj @NSPKU
Willow’s made up to be on YouTube again 😆👏🏻
Image from Chelsea Hodder (@chelseagloverx)
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