PKD International recently contributed to a high-level webinar on rare kidney diseases organised by the European Kidney Health Alliance (EKHA) and ERKNet.
Read more …Towards More Equitable and Patient-Centred ADPKD Care Across Europe
A powerful step forward led by the Fundación Mexicana para el Riñón Poliquístico A.C.
The recent ISN World Congress of Nephrology (WCN) in Yokohama Japan was a wonderful experience. I attended as a speaker and a member of the ISN Patient Liaison Advisory Group – the role that allows me to bring the patient voice into the heart of the nephrology community.
Read more …Building Bridges, One Conversation at a Time – WCN 26 Report
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
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.
Novartis has completed its acquisition of Regulus Therapeutics, the biotechnology company developing farabursen, an investigational therapy designed to target microRNA-17 with the aim of slowing cyst growth and preserving kidney function. The transaction has a potential value of up to USD 1.7 billion, reflecting increased commitment to advancing research and development in ADPKD - an area of considerable unmet medical need.
Read more …Important Update: Novartis Acquisition of Regulus Therapeutics
PKD International participated in the ADPKD Community Advisory Board organized by Vertex Pharmaceuticals. Members from Spain, Germany, Italy, and the UK brought the voice of the ADPKD patient community from across Europe to the table.