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.
Joined October 2026
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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: app.phebe.life/clear/lat1-co…
#PKU #RareDisease
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.
github.com/Cureledger/pku-co…
#PKU #PKUCommons
Phebe retweeted
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 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: app.phebe.life/clear/what-ha…
#PKU #RareDisease
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.
app.phebe.life/signup
#PKU #RareDisease
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: phebe.life
#PKU #RareDisease #NORDSummit
Phebe retweeted
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.
ALT Acting FDA Commissioner Kyle Diamantas speaking with NORD President and CEO Pam Gavin at the 2026 NORD Summit.
Phebe retweeted
This is the Phebe mission. Patient and family driven PKU research to address gaps that became chasms the old system
At the @RareDiseases conference with @FDA_KyleD discussing integrating patient voices early.
I’m old enough to remember when we were not welcome at the table. Thank you for the leadership!
Phebe retweeted
#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
Phebe retweeted
Phenylalanine to tyrosine ratio is key. Phe-free food lacks tyrosine so we need to supplement it
Another (again still small) study showing Phe-Tyrosine ratio is relevance; reason: Tyrosine influences neurotransmitter Dopamine; ppl who have #pku #phenylketonuria don't convert Phe into Tyrosine. One reason why full dose protein substitute is VITAL😎😎😎 onlinelibrary.wiley.com/doi/…
Meet our founder, @ninakilbride, at the 40th @official_espku Conference in Copenhagen. Come say hi and see how Phebe makes life with PKU easier: phebe.life
#PKU #ESPKU #Phenylketonuria #RareDisease
Phebe retweeted
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 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: app.phebe.life/clear/what-ha…
#PKU #RareDisease
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.
app.phebe.life/signup
#PKU #RareDisease
Phebe retweeted
See you there - HMU to chat about @phebepku
🎉 This week is E.S.PKU week!
Sharing moments from our 40th conference in Copenhagen? 🇩🇰
📸 #ESPKU2026 – photos & videos 📝 #ESPKUConference2026 – conference posts 🎉 #40Conferences1Community – celebrating our anniversary and community!
Share your experience!
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Android: play.google.com/store/apps/d…
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