
Meet Gisela
Advocacy, Stories & Insights“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.

Meet Delila – Living with Alagille Syndrome
Stories & InsightsValarie describes her family's journey with baby Delila who has Alagille syndrome.

Meet Kevin
Stories & InsightsA tale of racial bias that delayed a diagnosis.

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

Meet Lindsey
Stories & InsightsAt 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 on Caregiving
Advocacy, Stories & InsightsOn 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.

Meet Lillie
Stories & InsightsLillie 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.

Connecting More People to Optimal Rare Disease Care
News, Stories & InsightsAn update on our partnership with Children's National Rare Disease Institute.

Meet Thomas
Stories & InsightsThomas, living with peroxisome biogenesis disorder-Zellweger spectrum disorder (PBD-ZSD), talks about his family, favorite activities and shares a knock-knock joke.

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