288 Photos and videos
Jun 12
🧵 🧬 KDIGO 2025 ADPKD Guideline | Vascular manifestations
📄 Read the full article: academic.oup.com/ndt/advance…
#KDIGO2025 #ADPKD #PKDInternational
@ERAkidney
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Jun 12
🧵 (3/4) The article, from the ERA Working Group Genes & Kidney, provides a European perspective on guideline implementation and highlights the importance of risk-stratified, individualised approaches — including patient information, selective screening, blood pressure control.
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Jun 12
🧵 (4/4) For the PKD community, this is an important contribution to better understanding how vascular risks in ADPKD can be assessed, communicated, and managed in clinical practice.
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Jun 10
🧵 🧪 STOP-PKD study | New recruitment sites. Research on ADPKD continues to move forward: stop-pkd.de/en
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Jun 10
🧵 (3/4) The study investigates dapagliflozin, an SGLT2 inhibitor already used in other kidney diseases, to explore whether it may provide clinical benefit for people living with #ADPKD.
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Jun 10
4/4 - Please check the map available on the study website to identify the nearest participating centre. If you need any support or guidance, we would be very happy to support you or to connect you with your local patient association.
@FLAVIAZH @MuellerRom @UKKoeln @Nierstichting
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🧵 Many PKD International members from around the world joined the Novartis ADPKD Advisory Board in Glasgow on 2 June to discuss patient needs, clinical trials, research access, and health equity.
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🧵(2/2) Thank you to Novartis and all participants for a valuable discussion and continued global collaboration.
#ADPKD #PatientAdvocacy #ClinicalTrials #PKDInternational
@FLAVIAZH @airg_e @AIRPonlus @FNALCER @PolykystoseFR @Nierstichting @NierpatientenNL
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✨ Only one day to go until #ERA2026 !
We are looking forward meeting, clinicians, researchers. Come and talk to our members — we would be delighted to meet you and answer your questions. 💛
📍 Glasgow & Virtual
🗓️ 3–6 June 2026
🤝 Visit us at Booth 2, Hall 5
@ERAkidney
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May 28
🧵 🥑 PKD & Food | Avocado Toast
A balanced diet can play an important role in the day-to-day management of Polycystic Kidney Disease (PKD). Through our nutrition series, we continue to share simple and flavourful recipes that support more informed food choices.
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May 28
🧵(2/3) 🌅 This time, we start with breakfast — featuring a classic: Avocado Toast. Easy to prepare, nutritious, and versatile, it’s an ideal way to begin the day with fresh ingredients and balanced flavours.
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May 28
🧵 (3/3) 📘 This recipe is taken from “Flavors that Nourish”, a recipe book inspired by holistic health for people with PKD, created by Riñón Poliquístico de México A.C. and authored by Ana Sofia López and L.N. Ari Cisneros.
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May 26
🧵💙 ERA Congress 2026 | Glasgow & Virtual
From June 3–6, 2026, Glasgow will host the 63rd ERA Congress, one of the leading international events in nephrology, research, and kidney health.
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May 26
🧵 (2/3) 🌍 PKD International looks forward to meeting patients, clinicians, researchers, and scientists from around the world. Unless we are attending PKD sessions, you will find us at our booth throughout the congress.
🤝 Visit us at Booth number 2 in Hall 5
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May 26
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May 22
🧵 🧬 ADPKD research needs your voice
The future of ADPKD research is evolving — and patient perspectives are essential to guide this change.
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May 22
🧵 (3/4) As new approaches such as AI and Open Science reshape research, understanding patient priorities becomes critical.
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May 22
🧵 (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.ph…
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