flok | Innovation of Care Care Conditions We Support flok App Nutrition For Clinicians For Partners Community Family Camps Guthrie-Koch Scholarships Events Research flok Research External Research Feed Our flok Research Partnerships About Us Mission & History Team Get Involved Contact Us News flok News Alerts Archived Articles Newsletter Download App Donate Care Conditions We Support flok App Nutrition For Clinicians For Partners Community Family Camps Guthrie-Koch Scholarships Events Research flok Research External Research Feed Our flok Research Partnerships About Us Mission & History Team Get Involved Contact Us News flok News Alerts Archived Articles Newsletter Download App Donate Discover flok Explore the flok vision in 2 minutes Serving the inherited metabolic disorder community If you have an inherited metabolic disorder or care for someone who does, flok is for you. flok was created for and by those who manage Classical Homocystinuria (HCU), Maple Syrup Urine Disease (MSUD), Phenylketonuria (PKU), Tyrosinemia, Organic Acidemias, and Urea Cycle Disorders (UCDs). These are rare, often severe conditions, which require lifelong treatment. Most are diagnosed through newborn screening and require a highly restrictive medical diet to prevent dangerous outcomes such as brain damage, coma, or death. In our flok flok serves those with the following conditions of protein metabolism: Phenylketonuria (PKU), Maple Syrup Urine Disease (MSUD), Classical Homocystinuria (HCU), Tyrosinemia, Organic Acidemias including Propionic Acidemia, Methylmalonic Acidemia, and Glutaric Acidemia, Urea Cycle Disorders including OTC Deficiency, Citrullinemia, Argininosuccinic Aciduria, Arginase Deficiency, NAGS Deficiency, and CPS-1 Deficiency Our community is pioneering research for IMD Despite the advantages of early diagnosis, our standards of care have not sufficiently progressed. flok will illuminate the lived experience of these conditions, empowering our community to improve care, inform research, and design more effective treatments. Our current understanding of these conditions is limited: it's based on infrequent tests, a narrow diagnostic approach, and clinical data isolated from daily life. This isolates patients, slows research, and impedes progress. flok will change this by combining patient-reported data with clinical, biometrics, and genetic records –guided by experts in the fields of medicine, genetics, ethics, and machine learning, and governed by our community. We have the potential to learn more in the next 5 years than we have in the last 50 by unlocking the data of our lived experience with cutting edge data processing capabilities. This approach is truly revolutionary. About our Research Strategy Daily Community care for those Managing IMD the flok app Backed by 35 years of research and dietary leadership, the flok app is the cornerstone of care for individuals managing an inherited disorder of protein metabolism. Explore the app Food Science The baseline treatment for flok conditions is a low-protein diet. flok has been the primary resource of this data for 35 years and is guided by a staff dietitian and collaborations with partner organizations and Genetic Metabolic Dietitians International. Explore our approach to food science Community By providing opportunities to connect, flok brings our community together to improve our lived experience. Some of these connections are in-person. Others are virtual. All of them are essential to our well-being and mental health as individuals and as a community. Explore our community offerings A community with Many Voices What people are saying about flok I can't wait for flok - I'm ready to be looked at as a whole person, not just a bunch of random unconnected data points. DB, Adult with Classical HCU When our daughter found out that "PKU Family Camp" was becoming flok camp, she said "that's nice, because instead of feeling like we are invited even though it's PKU camp, we feel like we belong, because it's for all of us." SM, Parent of a child with MSUD Our History & Team Founded by the Leaders of a Movement When Virginia Schuett, MS, RD first encountered PKU, one inherited disorder of protein metabolism, her patients were struggling to manage the medical diets they needed to thrive. In response, she developed The Low Protein Food List for PKU and with partners, two recipe books that introduced healthy, tasty, low-protein recipes to our community. In 1989, she founded National PKU News, with Dr. Robert Guthrie, founder of Newborn Screening, serving as an early board member. Explore our history Led by People Who Understand We are more than advocates for those managing inherited disorders of protein metabolism, we are also members of the flok. Each member of our staff and board has deep personal ties to these disorders. We are rallying our community to continuously improve our care and accelerate scientific progress with a passion that can only come with firsthand understanding of the challenges of managing these disorders. Learn more about our team here. Signup Be the first to know. 🦩 Email: First Name: Last Name: Phone number: Country/Region: Disorder community: Choose your community PKU HCU MSUD Multiple - Industry Multiple - Medical Professional Other Organic Acidemias Tyrosinemia UCD I agree to receive communications from flok™. Subscribe Error. Your form has not been submitted This is what the server says: There must be an @ at the beginning. I will retry Reply Uh oh! I will retry Signup Join the flok newsletter list. Enter your email: Subscribe Error. Your form has not been submitted This is what the server says: There must be an @ at the beginning. I will retry Reply Uh oh! I will retry Get in Touch Our excellent customer support team is ready to help. Contact us Looking to #flokyourfeed? Click here to create your own unique post for #PKUAwareness Month! Do it now Get notified Drop your email below and we'll let you know when applications are being accepted. Email address Sign Up Error. Your form has not been submitted This is what the server says: There must be an @ at the beginning. I will retry Reply Uh oh! I will retry © 2026 | flok™ All rights reserved. 501(c)(3) Nonprofit Organization #94-3098601 Programs flok App flok Family Camp Guthrie-Koch Scholarship Research flok Research Nutrition Science About Us FAQ Staff Board Scientific Advisory Contact Community Support flok Join Email List Email Us Terms of Service Privacy Center