In this episode of KDIGO Conversations in Nephrology, Dr. Carla Nester is joined by Marianne Silkjaer Nielsen. Not only is Ms. Nielsen the mother of a girl who lives with immune complex-MPGN, but she’s also the founder of CompCure, a not-for-profit association that is dedicated to improving outcomes in patients with C3G and immune complex-MPGN.

Together, their conversation will cover:

• The Diagnostic Journey: Rare diseases often have a long diagnostic journey. A specialized pathologist is often needed to identify the disease, and many patients are not diagnosed until they have severe symptoms.
  
• Therapeutic Challenges: The realization that there is no cure or disease-modifying therapy can be devastating. Furthermore, the lack of widespread experience in these rare diseases among physicians, coupled with a lack of long-term evidence, can lead to suboptimal care and poor outcomes.
  
• Impact of Delayed Treatment: Also discussed is the importance of screening programs for kidney diseases and access to targeted therapies—which until now, were not available—before critical illness sets in.
  
• Future Outlook and Advocacy: