PKD International

🧵 (6/6) This joint celebratory event brings together patient advocates, clinicians, and researchers in one place to strengthen dialogue and collaboration across the global PKD community. #StrongerTogether #Advancing #PKDresearch #ADPKD #ARPKD #ADPedKD #PatientAdvocacy

🧵 (5/6) KU Leuven is hosting their Clinical & Research Day on day before, 4 September, marking both International PKD Awareness Day and also the 10-year anniversary of the ADPedKD Registry.

🧵 For the first time, PKD advocates from across the world are coming together in person.

🧵 (4/6) Together we will define our shared priorities which will be captured in a Patient Voice Position Statement that will guide our advocacy for years to come.

🧵 (3/6) The day will centre around a hands-on workshops and open discussion focussing on how patients, patient organisations and the clinical community can harness our collective power.

🧵 (3/3) 🌍 At PKD International, we believe that sharing opportunities like this helps strengthen global collaboration and supports research that is increasingly focused on the needs of patients and families: pkdcure.org/.../grants/pkd…

🧵(2/3) The @PKDFoundation is now accepting applications for its 2026 Research Grant Program, supporting research on ADPKD and ARPKD with the goal of advancing our understanding of the disease, accelerating the development of new therapeutic strategies.

🧵🧬 Supporting the next generation of PKD research Progress in PKD research depends on investing in innovative ideas and the scientists working to turn discoveries into better care for patients.

🧵(3/3) Continued investment in high-quality research is positive news for the PKD community, and we look forward to following the progress of this important project. Read more: hsr.it/news/2026/giug… #PKDInternational #PKD #Research

🧵(2/3)🔬 This grant recognises the strength of their research and will support the next steps in translating scientific findings into potential therapeutic applications.

🧵🤝 PKD International congratulates Dr. Alessandra Boletta and her team on being awarded a European Research Council (ERC) Proof of Concept grant for the project “Targeting Glutamine (Q) Metabolism in the Renal Ciliopathies” (QrCiliopathies).

🧵 (5/5) 💛 Every response helps strengthen the patient voice and shape the future of ADPKD research. 🔗 survey.uni-koeln.de/index.php/3111… #ADPKD #PKD #PatientVoice #OpenScience #RareDisease #KidneyHealth #HorizonEurope @FLAVIAZH @MuellerRom

🧵 (4/5) The results will contribute directly to ongoing work across Europe and help researchers better understand what matters most to the PKD community. 📲 Take part today by scanning the QR code or following the link below. Simply select your language and complete the survey.

🧵 🧬 Patient perspectives matter in ADPKD research As research continues to evolve through Artificial Intelligence, data sharing, and Open Science, it is essential that the voices of people living with ADPKD remain at the centre of these developments.