PKU News

953 posts

PKU News

@howmuchphe

National PKU News provides support & resources to the PKU community. Phenylketonuria (PKU) is a rare genetic metabolic disorder that requires a low-protein diet

Montclair, NJ 加入时间 Haziran 2015

296 关注1.1K 粉丝

PKU News 已转推

flok@flokhealth·1 Eki

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… #RareAsOne #flokHealth #CZI #patientledresearch

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PKU News@howmuchphe·30 Eyl

@Popsicle DM sent

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Popsicle®@Popsicle·29 Eyl

@howmuchphe Hi there! We're sorry for any confusion, and we'd like to learn more about this. Would you mind sending us a DM?

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PKU News@howmuchphe·28 Eyl

Oops, @Popsicle, need your help: someone who can’t have aspartame due to #pku accidentally ate a sugar-free version of your tasty treat. Can you tell us how much aspartame there is per popsicle? Thanks!

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PKU News 已转推

Patients & Providers for Medical Nutrition Equity@NutritionEquity·31 Oca

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

Rep. Jim McGovern@RepMcGovern

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 已转推

flok@flokhealth·30 Oca

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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PKU News@howmuchphe·31 Ara

🎉 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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PKU News@howmuchphe·13 Ara

@catelynbaack Caty we've been trying to reach you with some news about the Guthrie-Koch Program.. can you DM or reach out to scholarship@pkunews.org ASAP? Thx!!

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Catelyn Baack@catelynbaack·1 Eyl

Hi! I'm raising money for Rose State Softball. Would you please consider donating? Thank you! raise.snap.app/fundraisers/ro…

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PKU News@howmuchphe·2 Eki

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!

flok@flokhealth

📣 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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PKU News@howmuchphe·13 Eyl

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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PKU News@howmuchphe·24 Ağu

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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PKU News@howmuchphe·11 Ağu

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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PKU News@howmuchphe·8 Ağu

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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PKU News@howmuchphe·3 Ağu

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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PKU News@howmuchphe·24 Tem

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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PKU News@howmuchphe·13 Tem

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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PKU News@howmuchphe·6 Tem

@NSPKU @MDDA_AU Pkunews.org/camp. Payment methods are credit card and echeck/ACH

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NSPKU@NSPKU·6 Tem

@howmuchphe @MDDA_AU Is there a link? And how can we pay….? PayPal or other….?

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PKU News@howmuchphe·6 Tem

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!

PKU News@howmuchphe

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