We're reimagining care and research for inherited metabolic disorders through robust resources, patient-led science, and a commitment to transforming our collective health.
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.
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.
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.
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.
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.
Voices from our community
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.
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."
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.
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.
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