Meet Gisela

“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.
Baby delila smiling in bed

Meet Delila – Living with Alagille Syndrome

Valarie describes her family's journey with baby Delila who has Alagille syndrome.
Kevin, living with FSGS

Meet Kevin

A tale of racial bias that delayed a diagnosis.
A boy and his parents seated outside

Meet Matthew

Author, composer and life-long learner, Matthew lives with peroxisome biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD).
Smiling young adult who shares her story about living with rare disease

Meet Lindsey

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).
Grace Whiting, National Alliance for Caregiving

Grace Whiting on Caregiving

On Rare Disease Day 2019, our team had the honor of speaking with Grace Whiting, president and chief executive officer of the National Alliance for Caregiving. Her compassion and professional energy to help caregivers is profound. We present the unedited words Grace shared with us here.
A mom and her daughter standing together

Meet Lillie

Lillie loves to dance. Hip hop, contemporary, ballet and jazz are her favorites. “I like the mixture of being able to be free and to just be graceful,” she shared. “But I also like going crazy and using strong movements.” Dancing is what this 15-year-old would prefer doing over just about everything else.
Marshall Summar, M.D., CNRDI

Connecting More People to Optimal Rare Disease Care

An update on our partnership with Children's National Rare Disease Institute.
Little boy in a blue shirt in a tree

Meet Thomas

Thomas, living with peroxisome biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD), talks about his family, favorite activities and shares a knock-knock joke.
Man in button-up shirt standing in front of fire engine

Meet Paul

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