Folia Health Launches FSGS PULSE Study to Generate a More Complete Understanding of FSGS Disease Burden and Treatment
Patient-informed, remote observational study will capture the day-to-day symptoms, treatment experiences and quality-of-life impacts of people living with FSGS
BOSTON, August 6, 2026 — Folia Health today announced the launch of the FSGS PULSE Study, a remote observational study designed to generate a more complete understanding of disease burden and treatment impact among people living with focal segmental glomerulosclerosis (FSGS).
FSGS is a rare kidney disease that can affect people differently over time. During an initial six-month observational period, participants will use Folia’s platform to track the symptoms and quality-of-life impacts most relevant to them alongside their individual treatment plans, including experiences that may not be fully captured by conventional reporting measures. Participants can also review the data they track with their care teams.
The resulting longitudinal dataset will give researchers a more detailed view of how FSGS is experienced day to day and the impact of new and existing treatments, helping to identify the outcomes that matter most to patients and inform the design of future studies in a heterogeneous, rare disease population.
“As a nephrologist specializing in rare kidney diseases, I see Folia’s platform as an essential bridge that transforms complex information about daily life with a rare renal disease into clear, actionable insights for patients and care teams,” said Yongen Chang, MD, PhD, FASN, a board-certified nephrologist, faculty member at UC Irvine and co-director of the Center for Glomerular Diseases. “I love how it empowers patients to take charge of their care, accurately track their day-to-day symptoms and treatment experiences, and have more informed conversations with their care teams during appointments.”
“People living with rare kidney diseases need more evidence from the real world to understand which therapeutic plan may be best for their situation and how much better they feel after transitioning to that plan,” said Nell Meosky Luo, founder and CEO of Folia Health. “At Folia, we’re excited to work with organizations investigating innovative therapies for rare kidney diseases to capture what matters most to patients: the daily realities of symptom burden, treatment trade-offs and health-related quality of life that complement traditional clinical endpoints. The FSGS-PULSE Study builds on Folia’s established track record in rare renal disease, where direct Home-Reported Outcomes are already helping reshape how research is designed and how treatment is understood.”
Participation
Are you living with or caring for someone with FSGS? Help enrich research as a patient, parent, or guardian by capturing what really impacts your condition day to day, right from home, on the Folia Health app. Learn how to enroll here.
About Folia Health:
Folia Health is a patient-led health company and the pioneer of home-reported outcomes (HROs), transforming lived health experiences into valuable structured data insights to advance research and personalized care. The company's platform is built on the belief that the knowledge of patients and caregivers is the missing piece to enable precise, individualized care and high-impact research. Through a useful platform, radical transparency, explicit consent protocols, and data dividend payments, Folia bridges the gap between patients, clinicians, and researchers while maintaining the highest standards of data privacy and patient autonomy. Founded in 2016 by family caregivers and based in Boston, Folia works with individuals across chronic and rare conditions to generate clinical-grade real-world evidence. For more information, visit www.foliahealth.com
Folia Health Contact:
Matt Berry
Director of Marketing
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