FSGS Support & Research
Living with FSGS? You don't have to navigate it alone.
Know Rare connects you with leading nephrologists, research and clinical trials dedicated to Focal Segmental Glomerulosclerosis — plus a compassionate community that truly understands your journey.
From the Know Rare Community
FSGS Resources & Stories
Expert insights, personal journeys, and practical guidance for living with FSGS — from people who understand.
Can Yoga Really Help with FSGS? See What the Research Says
Discover the benefits of yoga and how it can help with FSGS symptoms, and find out how to get started.
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Living with FSGS
Like many rare diseases, Focal Segmental Glomerulosclerosis (FSGS) is full of surprises, but the main challenge is navigating each day.
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Research in Action: Measuring Patient-Reported Outcomes in FSGS
Discover how patient-reported outcomes are shaping FSGS research and empowering those living with FSGS.
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Can Mind-Body Exercises Help with FSGS? See What the Research Says
Learn about Mind-Body Interventions (MBI) and how they can help with FSGS symptoms and overall well-being.
Read MoreHow It Works
Uncover your FSGS triggers, all while contributing to research.
Track your symptoms, flare-ups, and treatments from home — see your patterns over time and help advance FSGS research through Know Rare's network.
Share Weekly Updates
Log your daily experience — symptoms, flares, and how you're feeling — using Know Rare's easy health tracking tools.
See Real-Time Insights
Watch your health patterns emerge over time. Understand what triggers your flares and share those insights with your care team.
Short Monthly Check-Ins
Respond to brief, guided check-ins each month to stay connected with our team and contribute to ongoing research.
Advance FSGS Care
Help inform the future of FSGS treatment — all from the comfort of your home. Your experience drives research that benefits everyone.
Who This Is For
Whether you're living with FSGS or caring for someone who is — you belong here.
Living with FSGS?
Uncover your FSGS triggers, track your symptoms and flare-ups, and see your health patterns over time — all while contributing to research that could improve care for everyone living with FSGS.
Participate fully from home, on your schedule. Your daily experience is the most valuable data researchers need.
Get StartedDoes your child have FSGS?
Easily track your child's FSGS symptoms, flares, and treatments — while contributing to research that advances future care for children and families affected by FSGS.
Know Rare connects you to specialists, support, and a community of parents who understand what you're going through.
Get StartedFSGS Research & Support
Access the Latest Research
Share a few details and our live FSGS support team will reach out to connect you with specialists, research opportunities, and resources — tailored to your journey.