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.
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Rare Kidney Disease Patients Deserve Better

Help us improve the lives of families living with these conditions by downloading our new community call to action at
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.
NORD National Organization for Rare Disorders logo

Rare Caregiver Respite Program

NORD Rare Caregiver Respite Program provides rare caregivers with relief.
Gayle Sweeny, International Cystinuria Foundation

Meet Gayle Sweeney

Gayle Sweeney is on a mission to show people living with cystinuria and their loved ones – how to advocate for themselves. She has built a worldwide online community of people touched by this challenging genetic disease.
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Rare Disease Caregiving in America

The National Alliance for Caregiving (NAC) in partnership with Global Genes set out to examine the issues and challenges facing those who provide unpaid care to someone with a rare disease.