Patient stories
Stories of people living with rare and genetic kidney diseases.
All stories on this page are fictional. They were written for this practice project and do not describe real people or contain real patient data.
Meeting other patients was the moment I stopped feeling like a medical file and started feeling like a person again.
Diagnosed in her twenties, Marta found in a patient association the practical tips, and the friends, she needed.
Read Marta’s story
For three years we only had questions. A name for the disease gave us a direction.
Elena's son waited three years for a diagnosis. She now helps other families shorten that wait.
Read Elena’s story
Genetic testing did not only explain my illness. It helped my children plan their own futures.
A fictional story about a late diagnosis, family screening and taking part in research.
Read Marc’s story
The diagnosis had a name long before it had a face. Meeting other families gave it one.
A fictional story, written for this practice project, about a childhood diagnosis, a transplant and finding a community.
Read Lena’s story