Phebe

Live your life. Let Phebe do the math. The precision nutrition tracker for every amino acid, built by a PKU family. Free on iPhone and Android.

[Phebe @phebepku]

Hello from Phebe! 🍎🐝

Phebe is a personalized precision nutrition tracker for anyone who wants a better lens on their body, mind and day.

Every meal counted, down to all 18 amino acids. Search, scan or snap a label, and weigh it on a kitchen scale.

Built by a PKU family. 👇

[Phebe @phebepku]

Inattention fell 9.0 points where blood Phe fell most, 4.3 where it fell least (Bilder 2022). On the lifelong diet, kidney filtration fell as protein rose (Hennermann 2013). This week's model: https://t.co/s9UVNLE4Uw #PKU #RareDisease

[Phebe @phebepku]

58% of 254 people with PKU and caregivers in the UK ate out once a month or less; 44% had been refused an alternative dish (Poole 2022). This week's model: https://t.co/s9UVNLE4Uw #PKU #RareDisease

[Phebe @phebepku]

The low-protein diet: 30 minutes a day for an adult with PKU, 1 hour 24 for a caregiver, EUR 604 a year out of pocket, 99% of it food (Eijgelshoven 2013). This week's model: https://t.co/s9UVNLE4Uw #PKU #RareDisease

[Rare Disease Day @rarediseaseday]

📍 Planning a #RareDiseaseDay event?

Register it on our interactive map, or discover events happening around the world and find inspiration from previous years.

Every event helps strengthen our global movement! 👉 https://t.co/La1AFCaR0k

[Phebe @phebepku]

19 adults with PKU stayed on the low-protein diet, 24 stopped at a mean age of 7.8. At 22, the 19 had better social and academic outcomes (Koch 1996). This week's model: https://t.co/s9UVNLE4Uw #PKU #RareDisease

[Phebe @phebepku]

To eat, or not to eat. Deciding what to eat is one of the hardest things PKUers have to do every day. See why: https://t.co/s9UVNLE4Uw #PKU #RareDisease

[Phebe @phebepku]

LNAA Competition Therapy, Illustrated.
The other large neutral amino acids compete with phe for the one transporter into the brain, so less phe gets in. The LAT1 model shows how and why it works.
Run the model: https://t.co/mDHMIJnofk
#PKU #RareDisease

[Phebe @phebepku]

PKU hero: @AkshayGurav_ won the $2,000 Phebe hackathon prize with algorithmic efficiencies for the phe estimator, a repeatable hackathon framework, and a PKU food management app, all open source.
https://t.co/zqqCehlidy
#PKU #PKUCommons

[Nina Kilbride @ninakilbride]

One of the things we do with tech at Phebe is make research easier to understand for people affected by PKU. This model illustrates what happens at the blood-brain-barrier #phenylketonuria

[Phebe @phebepku]

The Phebe Founding 100: a membership campaign for people with PKU and the people who carry the PAH gene. Phebe is free. Join as a founding member.
https://t.co/k6HYbCg1Mn
#PKU #RareDisease

[Phebe @phebepku]

Catch our founder, @ninakilbride, at the @RareDiseases Breakthrough Summit in Washington, D.C., through tomorrow. Come say hi and see how Phebe makes life with PKU easier: https://t.co/Jj9F8VTnrF

#PKU #RareDisease #NORDSummit

[Phebe @phebepku]

@RareDiseases @CNBC @BeckyQuick @BioMarin @JazzPharma @OtsukaUS 🫡 we're collecting longitudinal dietary data sets from rare disease communities, starting with PKU

[National Organization for Rare Disorders (NORD) @RareDiseases]

Acting @FDA Commissioner Kyle Diamantas, @FDA_KyleD, sat down for a fireside chat with #NORD President and CEO Pam Gavin to kick off the 2026 #NORDSummit, where he shared that the #FDA is committed to modernizing its review process and is relying on #RareDisease patient voices to help shape its fit-for-purpose regulatory framework. We appreciated the opportunity to break down what that will entail, and we're excited to be a partner in this crucial, timely mission.

[Nina Kilbride @ninakilbride]

This is the Phebe mission. Patient and family driven PKU research to address gaps that became chasms the old system

[Dr.Suren Movsisyan🇪🇺 @SurenCBS]

#Mentalhealth and #PKU care shouldn't exist in two completely different silos. Caregiver reports are often the only bridge connecting neurodivergent traits in PKU patients to the support they actually need. @ninakilbride @phebepku

[Nina Kilbride @ninakilbride]

Phenylalanine to tyrosine ratio is key. Phe-free food lacks tyrosine so we need to supplement it

[Phebe @phebepku]

Meet our founder, @ninakilbride, at the 40th @official_espku Conference in Copenhagen. Come say hi and see how Phebe makes life with PKU easier: https://t.co/Jj9F8VTnrF

#PKU #ESPKU #Phenylketonuria #RareDisease

[Nina Kilbride @ninakilbride]

Paraphrasing Dr Waisburn: “There is no instrument to discern the confounding factors of high blood phenylalanine and the effects of low protein diet.”

Lack of patient participation is a problem - we’re on it

[Phebe @phebepku]

Phebe has illustrated a series of research papers about what it is like to live with PKU. The first dynamic model: what happens when you eat protein.
Run the model: https://t.co/zvzqqymeQ3
#PKU #RareDisease

[Phebe @phebepku]

The new Phebe is live! A personalized precision nutrition tracker. Tracks all amino acids and macros. Barcode scanner includes over 4 million foods and supplements. Join the Phebe Founding 100: create your account and opt in to the co-op.
https://t.co/k6HYbCg1Mn
#PKU #RareDisease