iiinova — where your digital self keeps evolving

PKD International @pkdinternational.bsky.social · 1h

🧵🌍 A new milestone for the STOP-PKD Study. Fundació Puigvert Barcelona has officially become the first active STOP-PKD trial site in Spain. This is an important step forward for the study and for the international effort to advance research in ADPKD.

100

PKD International @pkdinternational.bsky.social · 09/09/2026

🧵🧪 STOP-PKD study | Five additional trial sites successfully initiated The STOP-PKD study continues to expand its network across Europe, with five additional trial sites now successfully initiated in the Netherlands, Germany and Austria.

111

PKD International @pkdinternational.bsky.social · 07/09/2026

🧵💙 Leuven, two days of research, dialogue and community

120

PKD International @pkdinternational.bsky.social · 05/09/2026

🧵💙 What better way to celebrate PKD Awareness Day? By being together. Yesterday, at KU Leuven, we celebrated #PKDAwarenessDay with a special joint celebration with ADPedKD, surrounded by the people who give our community a face, a voice and, above all, a meaning: patients.

120

PKD International @pkdinternational.bsky.social · 05/09/2026

🧵💙 A day of connection, knowledge and shared commitment in Leuven 👉 Yesterday, 4 September, marked the beginning of the first PKD International Global Members Meeting, bringing together representatives and patient organisations from around the world in Leuven.

111

PKD International @pkdinternational.bsky.social · 03/09/2026

🧵💙 First day in Leuven for PKD International PKD International President @flaviagalletti.bsky.social has arrived in Leuven, Belgium, ahead of two important days for our international community.

100

PKD International @pkdinternational.bsky.social · 03/09/2026

🧵On 14 September 2026, Düsseldorf will host the PKD Symposium 2026, a hybrid event dedicated to people living with PKD, their families and caregivers, and anyone interested in learning more about the latest developments in research and care.

100

PKD International @pkdinternational.bsky.social · 31/08/2026

🧵💬 Five days to go. It’s time to bring patient voices together. On 5 September, representatives from PKD patient organisations will meet in Leuven for the PKD International Patient Voice Day, part of our first PKD Global Members Meeting.

111

PKD International @pkdinternational.bsky.social · 27/08/2026

🧵PKD International Members to Gather in Leuven for a Landmark Global Meeting: pkdinternational.org/news-and-eve...

100

PKD International @pkdinternational.bsky.social · 25/08/2026

🧵⏳ 10 days to go | 1st PKD Global Members Meeting In just 10 days, leaders from PKD International member organisations will come together in Leuven, Belgium, for the first PKD Global Members Meeting.

121

PKD International @pkdinternational.bsky.social · 21/08/2026

🧵💙 PKD Meeting Dresden | A space to connect and share Living with PKD can bring questions, changes, and difficult moments. Connecting with others who have similar experiences can offer support, understanding, and new perspectives.

120

PKD International @pkdinternational.bsky.social · 19/08/2026

🧵 Following developments in PKD research and clinical trials can be challenging, particularly for patients who are unfamiliar with—or find it difficult to navigate—the information available on ClinicalTrials.gov

121

PKD International @pkdinternational.bsky.social · 18/08/2026

🧵 💚 EMBO Cilia Conference 2027 | Patient's Day We are very pleased to share information about the Patient’s Day of the EMBO Cilia Conference, taking place on 8 March 2027 in Stresa, Italy.

130

PKD International @pkdinternational.bsky.social · 12/08/2026

🧵🍎 PKD & Food | Apple with Peanut Butter During the summer, a simple and refreshing snack can be the perfect way to enjoy a light and nutritious break.

110

PKD International @pkdinternational.bsky.social · 07/08/2026

🧵❤️ Kidney health and heart health go hand in hand The UK Government has published its new Cardiovascular Disease Prevention Framework, recognising the close relationship between cardiovascular disease and chronic kidney disease.

131

PKD International @pkdinternational.bsky.social · 30/07/2026

🧵🧪 STOP-PKD study | Four additional trial sites activated The STOP-PKD study continues to expand its recruitment network across Europe, with four additional trial sites now initiated: three in Germany and a second centre in Austria.

141

PKD International @pkdinternational.bsky.social · 27/07/2026

🧵🩺 Protecting kidney health starts early Kidney disease is influenced by many interconnected factors, including diabetes, obesity, and cardiovascular health.

120

PKD International @pkdinternational.bsky.social · 24/07/2026

🧵🍓 PKD & Food | Red Berry Smoothie As summer arrives, a fresh and light breakfast can be a great way to start the day. This month, our PKD & Food series features the Red Berry Smoothie — a simple, colourful, and flavourful recipe, perfect for the warmer season.

110

PKD International @pkdinternational.bsky.social · 21/07/2026

🧵☀️ Summer & Kidney Health | 4 practical tips for staying safe in the heat Hot weather can make it more challenging to manage thirst and fluid balance, especially for people living with advanced kidney disease or undergoing dialysis.

110

PKD International @pkdinternational.bsky.social · 17/07/2026

🧵🌍 Towards more equitable and patient-centred ADPKD care across Europe PKD International was pleased to contribute to the recent high-level webinar on rare kidney diseases, organised by EKHA - European Kidney Health Alliance and ERKNet.

120

PKD International @pkdinternational.bsky.social · 14/07/2026

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

110

PKD International @pkdinternational.bsky.social · 14/07/2026

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

110

PKD International @pkdinternational.bsky.social · 10/07/2026

🧵 🧬 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.

110

PKD International @pkdinternational.bsky.social · 08/07/2026

🧵🤝 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).

140

PKD International @pkdinternational.bsky.social · 03/07/2026

🧵 🧬 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.

110

PKD International @pkdinternational.bsky.social · 01/07/2026

🧵💙 Supporting kidney health at every stage of the journey Living with kidney disease means facing different challenges over time, and having access to the right information and support can make a meaningful difference.

110

PKD International @pkdinternational.bsky.social · 26/06/2026

🧵☀️ Summer & Kidney Health | 4 practical tips for hot days High temperatures can be particularly challenging for people living with advanced kidney disease or undergoing dialysis. As summer approaches, a few simple precautions can help improve comfort and wellbeing.

121

PKD International @pkdinternational.bsky.social · 24/06/2026

🧵💙 Behind every PKD diagnosis, there is a personal story. Living with PKD is about much more than managing a medical condition. It can mean facing uncertainty, navigating complex healthcare journeys, worrying about loved ones, and sometimes feeling alone.

110

PKD International @pkdinternational.bsky.social · 22/06/2026

🧵💧 PKD & Nutrition | When fluid needs change Hydration is often an important part of PKD management, but as kidney function declines, fluid needs may change.

110

PKD International @pkdinternational.bsky.social · 18/06/2026

🧵 Following the European Renal Association Congress 2026 in Glasgow, we would like to take a moment to thank everyone who visited the PKD International booth, shared their experiences and took the time to connect with us.

130

PKD International @pkdinternational.bsky.social · 10/06/2026

🧵 🧪 STOP-PKD study | New recruitment sites Research on ADPKD continues to move forward: stop-pkd.de/en

131

PKD International @pkdinternational.bsky.social · 03/06/2026

🧵 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.

130

PKD International @pkdinternational.bsky.social · 28/05/2026

🧵 🥑 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.

120

PKD International @pkdinternational.bsky.social · 26/05/2026

🧵 💙 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.

110

PKD International @pkdinternational.bsky.social · 22/05/2026

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

131

PKD International @pkdinternational.bsky.social · 19/05/2026

🧵 🧪 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.

122

PKD International @pkdinternational.bsky.social · 14/05/2026

PKD International was delighted to attend the @erknet.bsky.social 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

020

Reposted by PKD International

Roman-Ulrich Müller @muellerrom.bsky.social · 12/05/2026

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. 🧵

132

PKD International @pkdinternational.bsky.social · 12/05/2026

🧵 💙 WCN 2026 | What it means for the PKD community: www.pkdinternational.org/news-and-eve...

120

PKD International @pkdinternational.bsky.social · 07/05/2026

🌍 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.

120

PKD International @pkdinternational.bsky.social · 30/04/2026

🌍 #PKDInternational connects experiences and knowledge worldwide, building a strong global community for people affected by PKD. 🤝 Your support strengthens international initiatives and amplifies patients’ voices. 💛 Donate here: www.pkdinternational.org/donate

010

PKD International @pkdinternational.bsky.social · 24/04/2026

Sometimes, the most difficult part of living with PKD is understanding how to manage it day by day. That’s why we are promoting the PKD Foundation of Canada’s campaign: “$10 for 10 months” — a simple yet meaningful way to support education, and research: conta.cc/4lPyWlv

010

PKD International @pkdinternational.bsky.social · 21/04/2026

🧵🎥 From Guidelines to the Clinic: Shared Decision-Making in ADPKD Care Clinical guidelines are essential tools in guiding care decisions in ADPKD — but how are they developed, and how can patients use them in real-life settings?

120

PKD International @pkdinternational.bsky.social · 17/04/2026

🧵 🧬 Help shape the future of ADPKD research Are you living with ADPKD? Your perspective matters. PKD International is part of the ARTICYST Project, a European initiative bringing together research centres and the patient community to improve the future of ADPKD research.

131

PKD International @pkdinternational.bsky.social · 14/04/2026

🧵 There are moments along the PKD journey that can feel especially challenging. As kidney function declines, questions begin to arise — about dialysis, transplantation, and what lies ahead. Facing this stage alone can feel overwhelming.

120

PKD International @pkdinternational.bsky.social · 13/04/2026

🧵We are pleased to announce that the UMCG - Universitair Medisch Centrum Groningen in the Netherlands is now officially accredited as a trial site for the STOP-PKD Study.

121

PKD International @pkdinternational.bsky.social · 10/04/2026

🧵🧪 Important recruitment update on the STOP-PKD study (1/6) We are very pleased to share a significant update on the #STOP-PKD study, an important European research initiative for people living with #ADPKD.

132

PKD International @pkdinternational.bsky.social · 07/04/2026

🧵 1/4 Living with #ADPKD? Take the survey and use your voice to shape the future of ADPKD research. 📣 survey.uni-koeln.de/index.php/31... 🪡 Read this thread 👇 #PKD #PatientVoice #OpenScience #RareDisease #KidneyHealth #HorizonEurope #European #Research

142