National PKU News provides support & resources to the PKU community. Phenylketonuria (PKU) is a rare genetic metabolic disorder that requires a low-protein diet
Joined June 2015
- Tweets 953
- Following 296
- Followers 1,092
- Likes 548
364 Photos and videos
PKU News retweeted
1 Oct 2024
Thrilled to announce that flok will receive $800,000 from @cziscience Rare As One Project to advance care and research in rare inherited conditions of protein metabolism. Honored to be part of this movement! flok.org/news/flok-rare-as-o… #RareAsOne #flokHealth #CZI #patientledresearch
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PKU News retweeted
Thank you @RepMcGovern for advocating on the House floor today for the 2.7 million Americans with gastrointestinal or inherited metabolic disorders who rely on #medicalnutrition. It's #TimeforMNEA
30 Jan 2024
I introduced the Medical Nutrition Equity Act with @RepRutherfordFL so families impacted by inherited metabolic diseases or gastrointestinal conditions can access the specialty food and formula they need to live their lives to the fullest. Congress should pass it NOW!
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PKU News retweeted
30 Jan 2024
Sharpen your pencils ✏️! The Guthrie-Koch Scholarship is ready to empower higher education students in our flok. College students with Classical #HCU, #MSUD, an #OrganicAcidemia, #PKU, #Tyrosinemia, or a #UreaCycleDisorder can apply by March 15 at scholars.flok.org.
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31 Dec 2023
🎉 Celebrate PKU News' transformation to @flokhealth and our community's future with a gift to flok in 2023. All gifts will be matched 💪 Amplify your impact and uplift our community by supporting flok today! flok.org/takeflight 🚀
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2 Oct 2023
As we expand our support & services beyond just #PKU to those with #MSUD, #HCU, #Tyrosinemia, #UreaCycleDisorders, and #OrganicAcidemias, we know you have questions! Follow @flokhealth to learn more!
2 Oct 2023
📣 Got questions about the PKU News (@howmuchphe) to flok transformation? We've got answers!
❓ What is flok?
❓ Acronym or not?
❓ Who's it for?
Follow us, visit the flok blog and catch a sneak peek of what's to come! 🌟
flok.org/news
#flok #PKUNews #WeAreFlok
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13 Sep 2023
Exciting news this #NewbornScreening Month! In Oct, National PKU News becomes flok, focusing on #PKU more inherited metabolic disorders. We're going data-driven & staying community-led. Learn more & get updates at flok.org! #raredisease #patientledresearch
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24 Aug 2023
Camp was amazing and we cannot wait for next year!
Announcement: In-person Camp will be May 30 - June 2nd, 2024!
Thank you to everyone who made camp possible, especially YOU campers!
#pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #flok
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11 Aug 2023
LAST CHANCE, VIRTUAL CAMP IS TOMORROW! It's not too late to make connections with the people who get you.
Register before 8pm Pacific Time at pkunews.org/camp
#pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #flok
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7 Aug 2023
Emails are out, boxes are shipped, Virtual Camp is THIS SATURDAY!!
On the fence? Act Fast! Register before 8pm Pacific Time at pkunews.org/camp
#pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #flok
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2 Aug 2023
A great team of volunteers spent last weekend packing more than 215 camp kits!
Haven't registered yet? You can still join the fun on 8/12 and it's only $5 at pkunews.org/camp!
#pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #flok
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24 Jul 2023
The Low-Phe Life is an animated series that explores the lighter side of metabolic living! Catch the season 2 PREMIERE on August 12th!
Register today at pkunews.org/camp
#pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #raredisease #flok
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13 Jul 2023
Learn a delicious new recipe and enjoy a live Q&A with Chef Brenda Winiarski as well as meal planning for *all* tolerances with Jenn Beazer RDN.
Register today at pkunews.org/camp
#pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #flok
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6 Jul 2023
Hey @NSPKU @MDDA_AU we’d love to have you and your followers join Virtual Family Camp! Many sessions will be available on demand, so you can watch them on your schedule if time zones don’t match up!
5 Jul 2023
Join more than 500 members of the metabolic community for VIRTUAL FAMILY CAMP on August 12th!
Register now: pkunews.org/camp
🌏International 👪 All Ages
#pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #raredisease #flok
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5 Jul 2023
Join more than 500 members of the metabolic community for VIRTUAL FAMILY CAMP on August 12th!
Register now: pkunews.org/camp
🌏International 👪 All Ages
#pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #raredisease #flok
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29 Jun 2023
Last shot to snag the kit goodies for when you connect with your community at Family Camp!
pkunews.org/camp
#pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #raredisease #flok
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22 Jun 2023
Register for Family Camp by 7/1 to secure your kit!
pkunews.org/camp
#raredisease #metabolicdisorder #flok #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTC #IEPM
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16 Jun 2023
Join your community from around the world at Virtual Camp! It's a day of activities, talks, and fun as well as an at home camp kit.
Reserve your spot today at pkunews.org/camp
#raredisease #flok #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia
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7 Jun 2023
Thank you to the more than 250 campers from 14 states who attended our record breaking in-person camp at Washington Family Ranch.
Virtual Camp is around the corner on August 12th. Reserve your kit and register now at pkunews.org/camp
#lowprotein #metabolicdisorder #flok
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1 Jun 2023
In just a few hours the 20th anniversary of Family Camp will be here! Want to join in on the fun?
Register for Virtual Camp August 12th pkunews.org/camp
#lowprotein #metabolicdisorder #flok #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #raredisease
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