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flok Health Awarded Chan Zuckerberg Initiative’s Rare As One Project Grant

flok Health Awarded Chan Zuckerberg Initiative’s Rare As One Project Grant

MONTCLAIR, N.J., (Oct. 1, 2024) –  flok Health (flok) is proud to announce its selection as a member of the Chan Zuckerberg Initiative’s (CZI) Rare As One Project (RAO), joining 29 other organizations in the third cohort of this groundbreaking initiative. This recognition highlights CZI’s confidence in flok’s mission to unite care and research, driving scientific progress for individuals with inherited conditions of protein metabolism. The grant will provide $800,000 over five years to support flok’s patient-led efforts to improve care and accelerate research for this underserved rare disease community. 

The community served by flok faces critical unmet needs. “Understanding of our conditions hasn’t sufficiently advanced, research remains narrowly focused, findings are siloed, and patient voices are underrepresented,” explains flok Executive Director, Sarah Chamberlin. “At baseline, all these conditions are managed with a difficult, restrictive, and costly low-protein diet. Some have FDA-approved treatments as well, but standards of care focus too narrowly on limited biomarkers and fail to reflect the full health impact of these conditions. Collaboration with the Chan Zuckerberg Initiative and members of the Rare As One Network, along with our current partners, will help us unlock new approaches to care, research, and treatment that meet the needs of our community.”  

With CZI’s support, flok will expand the impact of its app – the first daily care and research platform for inherited metabolic conditions – while facilitating the engagement of patients, clinicians, and researchers to improve collective health outcomes. Together, the flok community will build the most comprehensive dataset for these rare conditions, paving the way for research breakthroughs and transformative treatments. Chamberlin noted, “Through all our programs, flok brings care and research together. We’re grateful for CZI’s support of this work and honored to be among an amazing group of rare disease organizations realizing meaningful, measurable change for their communities.” 

CZI’s partnership extends far beyond funding, offering training, mentorship, and opportunities to collaborate with other rare disease organizations. Sixty years ago, newborn screening revolutionized the early detection and treatment of many of our conditions; After 35 years of service, National PKU News moved last year from supporting a single metabolic condition to serving and fueling research for 13. By engaging with the Rare As One network, flok is poised to build on this progress over the next five years, steering unprecedented advancements in care, deepening our understanding of rare metabolic diseases, and equipping our community to drive research on new treatment pathways. To join us, sign up for our newsletter at flok.org/signup

For more information and media inquiries contact Sarah Chamberlin at [email protected] or 718-500-3565.  

About flok: flok Health (flok.org) is a non-profit organization dedicated to advancing research and enhancing the quality of life for individuals with rare inherited conditions of protein metabolism including Classical Homocystinuria, MSUD, Organic Acidemias, PKU, Tyrosinemia, and Urea Cycle Disorders. flok empowers our community to better understand and manage our health, while driving research that transforms care and treatment for these rare conditions.  

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