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
Joined June 2015
Oops, @Ice_Breakers, need your help: someone who can鈥檛 have aspartame due to #pku accidentally ate some of your mints. Can you tell us how much *aspartame* there is per mint? Thanks!
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馃帀 Celebrate PKU News' transformation to @flokhealth and our community's future with a gift to flok in 2023. All gifts will be matched 馃挭 Amplify your impact and uplift our community by supporting flok today! flok.org/takeflight 馃殌
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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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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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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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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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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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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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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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Join more than 500 members of the metabolic community for VIRTUAL FAMILY CAMP on August 12th! Register now: pkunews.org/camp 馃審International 馃應 All Ages #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #OTCdeficiency #raredisease #flok
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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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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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Replying to @PTCBio
@PTCBio announced their APHENITY trial achieved its primary endpoint with sepiapterin in PKU patients. Questions? Email [email protected]. National PKU News is sharing this with the IEM community but does not endorse any company, product, or trial. #raredisease #PKU
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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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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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Join your IEM community from the comfort of your home on August 12th and see the new season of The Low-Phe Life! Register now at pkunews.org/camp #lowprotein #metabolicdisorder #flok #pku #ureacycledisorder #hcu #msud #tyrosinemia #organicacidemia #raredisease
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