PKD International

A Global Alliance of #PKD Patient Groups promoting research and improved care for everyone affected by #ADPKD and #ARPKD

[PKD International @PKD_Int]

@PKDAustralia @PKDCharity @PKDFoundation @endPKD @SwissPkd

[PKD International @PKD_Int]

🧵 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.

[PKD International @PKD_Int]

🧵(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

[PKD International @PKD_Int]

✨ 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

[PKD International @PKD_Int]

🧵 (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.

[PKD International @PKD_Int]

🧵 🥑 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.

[PKD International @PKD_Int]

🧵(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.

[PKD International @PKD_Int]

🧵 (3/3) Learn more: https://t.co/IhzZcPePpv

@ERAkidney

#PKDInternational #ADPKD #ARPKD #ERA26

[PKD International @PKD_Int]

🧵💙 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.

[PKD International @PKD_Int]

🧵 (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

[PKD International @PKD_Int]

🧵 (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.

📲 https://t.co/aHBWz9PgNc

[PKD International @PKD_Int]

🧵 🧬 ADPKD research needs your voice

The future of ADPKD research is evolving — and patient perspectives are essential to guide this change.

[PKD International @PKD_Int]

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

[PKD International @PKD_Int]

🧵 (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

[PKD International @PKD_Int]

🧵🧪 STOP-PKD study | Expanding recruitment across Europe : https://t.co/OntDB0Jp8z

The STOP-PKD study continues to expand, marking an important step forward for ADPKD research in Europe.

[PKD International @PKD_Int]

🧵 (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.

[PKD International @PKD_Int]

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

[Roman-Ulrich Müller @MuellerRom]

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.
🧵