Tiffany

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Managing a diagnosis of FSGS that came during COVID-19

Thomas

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Thomas enjoys many things typical of twelve-year-old kids: sports, time with his friends, and playing video games. But Thomas’ journey has not always followed the typical path for kids his age.

Gisela

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“How do you know you have IgA nephropathy?” asked Gisela’s nephrologist skeptically. Gisela was 30 years old, talking to a nephrologist for the first time in a decade. Read and watch her story.

Delila

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Valarie describes her family's journey with baby Delila who has Alagille syndrome.

Kevin

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A tale of racial bias that delayed a diagnosis

Matthew

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Author, composer and life-long learner, Matthew lives with peroxisome biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD).

Christopher

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Hear from Christopher as he describes his journey with focal segmental glomerulosclerosis (FSGS), from diagnosis and day-to-day with this rare kidney disease, to his work with NephCure Kidney International.

Lindsey

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At the 2019 ERA-EDTA Congress in Budapest, the company hosted a panel discussion led by people living with rare glomerular disease. Lindsay, a 17-year-old scholar, athlete and musician, shared about her journey with focal segmental glomerulosclerosis (FSGS).

Lillie

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Lillie – living with IgA nephropathy, and her mom Carrie, talk about life with rare kidney disease.

Paul

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Paul, living with cystinuria, talks about the critical role of water – both in his profession and for managing his rare condition.

Gayle

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Building an online community for people impacted by a rare genetic condition