Episode 23: A Patient and Caregiver Perspective
Update: 2025-09-03
Description
What does life with a rare kidney disease really look like?
Marianne Silkjaer Nielsen (Founder of CompCure, Denmark) offers a powerful voice for patients and caregivers. She reflects on the long diagnostic journey, the challenges of managing rare kidney disease, and the need for better awareness, advocacy, and international registries to improve outcomes.
This episode is part of a four-part KDIGO Conversations in Nephrology series on complement-mediated kidney diseases, hosted by Dr. Carla Nester (University of Iowa Stead Family Children’s Hospital, United States).
This series was supported by Apellis and Sobi.
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