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Andrea with his family

Strong in Fragility: A Father’s Journey with ARPKD on Rare Disease Day

My name is Andrea. I am 43 years old and the father of three wonderful children: Giuseppe (15), Francesca (10) and Alessandro (5). Two of them, Giuseppe and Alessandro, live with a rare disease: Autosomal Recessive Polycystic Kidney Disease (ARPKD). Being a father in these circumstances means learning very early that life no longer follows the “normal” rhythm of most families. Every decision becomes intertwined with appointments, treatments, hospital stays and waiting times, and the future is measured in small but vital goals.

Read more …Strong in Fragility: A Father’s Journey with ARPKD on Rare Disease Day

ARTICYST Survey

The ARTICYST consortium brings together leading European centres of excellence in kidney research, including Translational Nephrology at the Faculty of Medicine and University Hospital Cologne in Germany, the Department of Nephrology at University Medical Center Groningen in the Netherlands, and PKD International representing the patient voice at international level.

Read more …ARTICYST Survey