PKD International

🧵 (4/4) This survey is designed to capture those perspectives — helping researchers identify key needs, improve how data is used, and ensure that future tools and studies are developed responsibly and with patients at the centre. 📲 survey.uni-koeln.de/index.php/3111…

🧵 (3/4) As new approaches such as AI and Open Science reshape research, understanding patient priorities becomes critical.

🧵 🧬 ADPKD research needs your voice The future of ADPKD research is evolving — and patient perspectives are essential to guide this change.

🧵 (4/4) Led by the University of Cologne, STOP-PKD aims to explore whether this treatment could help slow disease progression and offer new options for patients. A clear sign of growing collaboration and progress across Europe. @FLAVIAZH @MuellerRom @UKKoeln @Nierstichting

🧵 (3/4) The study focuses on dapagliflozin, an SGLT2 inhibitor already used in other kidney diseases, but not previously studied in people living with ADPKD.

🧵🧪 STOP-PKD study | Expanding recruitment across Europe : stop-pkd.de/en The STOP-PKD study continues to expand, marking an important step forward for ADPKD research in Europe.

PKD International was delighted to attend the ERKNet Annual Meeting in Lyon, contributing the patient voice in 2 WGs and participating in valuable discussions on clinical trial readiness and collaboration for rare kidney diseases across Europe. #RareKidneyDiseases #ADPKD #ARPKD

I usually think twice before posting preprints. But this time it’s different. MEDA-PKD is the essence of our work over more than a decade — and, to me, one of the most meaningful contributions I’ve been able to make to biomedical research. 🧵

🧵 (5/5) ✍️ The report is authored by Bill Wang, member of PKD International, whose contribution highlights the importance of global engagement and collaboration: pkdinternational.org/news-and-event…

🧵 (4/5) For #PKDInternational, participation in WCN is essential to ensure that the patient perspective continues to be represented within high-level international discussions, strengthening the connection between scientific progress and real-world impact.

🧵 💙 WCN 2026 | What it means for the PKD community: pkdinternational.org/news-and-event… The World Congress of Nephrology (#WCN2026) provided an important platform for global dialogue on the future of kidney research, clinical innovation, and patient care.

🧵 (4/6) For PKD International, participation in WCN is essential to ensure that the patient perspective continues to be represented within high-level international discussions, strengthening the connection between scientific progress and real-world impact.

🧵 (3/6) 🌍 For the PKD community, these developments reflect a broader shift towards research that is more coordinated, evidence-driven, and responsive to patient needs.

🧵 (4/4) 🤝 PKD International is proud to stand alongside the Mexican community on this journey. 🔗 Read the full article: pkdinternational.org/news-and-event…

🧵 (3/4) ❤️ A powerful and meaningful moment, driven by the commitment of the Foundation and the determination of Ana Patricia Vite Abdo: a concrete step towards greater awareness, earlier diagnosis, improved access to care, and a stronger voice for patients and families.

🌍 A historic milestone for PKD in Mexico — and just the beginning of something bigger. 📅 On 29 April 2026, a legislative initiative was presented at the Chamber of Deputies to establish 4 September as National Polycystic Kidney Disease Awareness Day.