Jamela, living with HCU

Jamela

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Diagnosed at birth with homocystinuria, Jamela reflects on what it was like growing up with this rare metabolic condition, and how her family continues to be a source of strength.

Benji

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Benji, nine years old, loves wrestling with his father and playing with his best friends. He is quite fond of elevators – both watching them and riding in them. Benji is a happy kid. He is also a rare kid, and lives with NGLY1 deficiency, a complex neurological syndrome resulting from a shortage of the enzyme N-glycanase 1. Read about Benji’s ultrarare journey,

Stuart

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Ten years after being diagnosed with IgA nephropathy, a rare kidney disease, Stuart’s kidney function had depleted significantly. Today, after a lifesaving kidney donation from his wife, Stuart gives back to the kidney community through advocacy

Chris

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Chris was just a teenager when he was diagnosed with a rare genetic condition called cystinuria, which causes cystine kidney stones that often require surgery to remove.

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