Genetics in Kidney Health Summit - Session 5d: Patient Empowerment скачать в хорошем качестве

Genetics in Kidney Health Summit - Session 5d: Patient Empowerment

This is a recording from the KDIGO Genetics in Kidney Health Summit. The summit took place in Chicago, Illinois, from September 25–26, 2025, and was co-chaired by Ali Gharavi, MD (Columbia University Medical Center, United States), Anjay Rastogi, MD (University of California, Los Angeles, United States), and Xiangling Wang, MD (Cleveland Clinic, United States). The invitation-only educational summit, built on the findings of the KDIGO Controversies Conference on Genetics in CKD held in March 2021, focused on advancing practical strategies to integrate genetic testing into nephrology practice and increase its adoption in the United States. This patient-led discussion from the Genetics in Kidney Health Summit explores the lived experience of genetic kidney diseases, including diagnosis, emotional impact, and the role of genetic testing. The session is moderated by Andre Weintock, PhD (a patient with X-linked Alport syndrome, a two-time kidney transplant recipient, and Research Director at the Alport Syndrome Foundation). Patient panelists share personal journeys with polycystic kidney disease, Dent disease, and Alport syndrome, highlighting delayed diagnoses, family impact, guilt, and the importance of clinician observation and listening. The discussion underscores how genetic testing can prevent misdiagnosis, guide treatment and family planning, and provide clarity and hope. Panelists offer candid advice to clinicians on recognizing key clinical clues, addressing mental health, and partnering with patients and families throughout care.