PKU News

Oops, @Ice_Breakers, need your help: someone who can’t have aspartame due to #pku accidentally ate some of your mints. Can you tell us how much *aspartame* there is per mint? Thanks!

🎉 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 🚀

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

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

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

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

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

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

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

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

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

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

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

@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

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

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

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

Did you know there are 10 types of Homocystinuria? Spreading awareness is crucial for our rare community to gain resources, research, and funding. Let's work together to make sure no one living with HCU (or any other IEM) feels alone or unsupported. #flok #HCU #raredisease