💛 I am truly grateful for this opportunity. Thanks @theracilproject.bsky.social for ensuring that the patient perspective is included in the consortium’s work.

A heartfelt thank you to the ERA Board for recognising the essential role of the patient perspective and for including PKD International in the first edition of the ERA Science Meetings. #PKDInternational #ERASciencemeetings

📊 An interesting new report from @kidneyresearchuk.org reveals the hidden burden of rare kidney diseases The publication sets out 14 key recommendations to drive change in health policy and research → www.kidneyresearchuk.org/about-us/pol... #PKDInternational #KidneyResearchUK

✨ Useful PKD resource alert 💛 We’re happy to share this clear, practical guide from PKD Foundation of Canada on food safety and nutrition for people living with #PKD 👉 www.endpkd.ca/food_safety_... #ADPKD #ARPKD #KidneyHealth #FoodSafety #Nutrition #PatientEmpowerment #PKDCanada

#PKDInternational Board Update — November 2025 At our recent Board meeting we reviewed progress and agreed key priorities for the year ahead 👇

🇨🇦 Empowering the PKD Community — The Canadian PKD Summit Awaits! On 5–6 November, PKD Foundation of Canada will host its annual online PKD Summit — two days dedicated to learning, support, and connection for everyone affected by PKD. 👉 Register here: myemail.constantcontact.com/Register-Now...

🔬 Multi-Omics: A Personalized Future for #PKD Patients Multi-omics research is already transforming #ADPKD and #ARPKD studies. 💡 These advances bring us closer to a future where therapies are guided by each patient’s unique biological profile 👇 @theracilproject.bsky.social @erknet.bsky.social

¡Bienvenidos, pacientes mexicanos! 💛 I'm very happy for this new addition to the PKD Global Family 🌎

In the last few years we’ve seen remarkable progress in diagnostic and care for #ARPKD patients. I m looking forward to see where this acceleration will take! 💛🌷

🌟 Live from @theracilproject.bsky.social Annual Meeting in Strasbourg! PKD International is represented by our President, @flaviagalletti.bsky.social, PELSI Board member, ensuring the patient voice shapes research & care for #PKD. 💛 #PKDResearch #ADPKD #ARPKD

💦 Staying well-hydrated is essential for those living with polycystic kidney disease (PKD). Emily Campbell, Registered Dietitian, explains that proper hydration lowers vasopressin and helps flush waste through urine. 🔗 Read the full article on @endpkd.bsky.social: www.endpkd.ca/hydration_an...

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On September 20, 2025, at the Auditorium Testori in Milan, the event “AIRP: 20 Years of Commitment in the Fight Against Polycystic Kidney Disease, Supporting Patients” will take place. We are proud to stand alongside AIRP in this shared mission 👉 renepolicistico.it/save-the-date

In this video, Professor Dominique Guerrot presents the DAPA-PKD study, a collaborative research effort he co-leads with Professor Emilie Cornec-Le Gall (Brest). This important study will evaluate the potential of SGLT2 inhibitors, such as dapagliflozin, in the treatment of #ADPKD.

Researchers from the #ARegPKD registry & #TheRaCil Consortium developed a risk score for 2-month-old babies with #ARPKD to predict the likelihood of needing kidney replacement therapy early in life: bit.ly/4fUcyEU #PKDInternational

Yesterday was such a busy day with patients meeting, planning, dreaming and slowly shaping the future.. the best way to spend #PKDAwareness day! And now we are looking forward to the rest of the month packed with amazing events and activities for #ADPKD and #ARPKD

🌍 On Sept 4, the global PKD community unites for #PKDAwarenessDay to raise awareness, support patients & push research forward. #PKDInternational #EndPKD #ADPKD #PKDResearch

💛 Why Are Kidneys So Important? Kidneys perform vital functions for our bodies: they filter toxins, regulate fluids, control blood pressure, support bone health, and aid in red blood cell production. When kidney function is impaired, it affects the whole body. #PKDInternational

KDIGO ADPKD Guideline: A Milestone in Genetic Kidney Diseases Why is a global guideline for ADPKD so important? Prof. Roman Müller explains how the new KDIGO guideline marks a crucial step forward in harmonizing care for patients with #ADPKD) worldwide 👇

Millions of patients around the world live with Polycystic Kidney Disease, facing daily challenges and uncertainties. Every contribution moves us closer to improved care and a brighter future for the PKD community. pkdinternational.org/donate #PKDInternational #DonateForPKD

🌞 Stay Cool, Stay Safe: #SummerTips for Living with #PKD Hot weather can bring extra challenges for those living with Polycystic Kidney Disease (PKD). These simple precautions can help you enjoy the season while protecting your kidneys and overall health 👇

💬✨ How Can Your Story Shape the Future of Kidney Care? Join us on July 22 for an inspiring webinar hosted by the PKD Foundation of Canada and discover how patients are stepping up as partners to drive meaningful change. 🔗 Register for free: us02web.zoom.us/webinar/regi...

📺 Patient-scientist collaboration – key to investigator-initiated trials: SGLT2i and beyond. In this video interview, Prof. @muellerrom.bsky.social highlights the power of working together: scientists, patients, and advocacy groups united to tackle the big questions in #PKD #PKDInternational

🎥🧪 SGLT2 Inhibitors: Should They Be Used in ADPKD? In this new video, Prof. @muellerrom.bsky.social — medical doctor and researcher at the University of Cologne — explores one of the most debated questions in the field of kidney disease today 👇 #PKDInternational

This is a question #ADPKD patients have been wondering about for quite some time. Thankfully, two studies are now underway 🥳 and that should finally provide some answers. We’re looking forward to the results!

🧬 Living in a family with a rare kidney disease affects more than your body & can be overwhelming! @eurordis.bsky.social has created a #free Mental Health Toolkit for those dealing with #RareDisease. Protect your #MentalHealth today! 👉 mhtoolkit.eurordis.org #ADPKD #ARPKD #MentalHealthMatters

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We are monitoring the situation with keen interest

Not to be missed! Two powerful life experiences

🌞 Summer Tips Hot weather can pose additional challenges for people living with Polycystic Kidney Disease (PKD). Here are some essential tips to help you stay well and protect your kidneys during the warmer months 👇 #PKDTips #PKDInternational #LivingWithPKD #ADPKD #ARPKD

#PKDKnowledge — A Shared Vision of #OpenScience “Why is open science important to patients? Because time matters.” 🗣️ Our President @flaviagalletti.bsky.social reminds us that patients don’t have time to waste. We often only see published studies — but that’s just the tip of the iceberg 👇

#PKDKnowledge — A Shared Vision of Open Science. “Why is open science important for polycystic kidney disease?” It’s a vital question and one that @muellerrom.bsky.social, Professor of Translational Nephrology and Deputy Director at the University Hospital of Cologne, helps us explore 👇

Impressive results from #CRISPR - Cas12 in PH1—up to 60% oxalate reduction with one dose! Looking forward to future breakthroughs targeting other organs. 🧐#GeneTherapy #RareDisease #ERA25

Different paths, various diseases, one purpose!

Ready-set-GO! Vienna, here we come!

Next week join me in Vienna at #ERA25! When not in meetings or attending key sessions, you’ll find me and my colleagues at the @pkdinternational.bsky.social booth (info👇). Come say hi — we’d love to connect, share insights, and talk all things #ADPKD & #ARPKD ! #PatientEngagement

Thanks @eurordis.bsky.social for giving me the opportunity to contribute to the workshop in “volunteer engagement across the medicines lifecycle and healthcare” by sharing my experience with @erknet.bsky.social it was a real pleasure! 🤝

Thank yoy @erknet.bsky.social 🫶🏽 for an inspiring 3-day Annual Meeting in Leuven! Grateful to contribute to this ERN and amazing ePAG team ⭐️ Exciting #ADPKD & #ARPKD projects ahead 🎉

@muellerrom.bsky.social medical doctor and researcher at the University of Cologne, is attending the @erknet.bsky.social meeting. Müller highlights how collaboration and unified scientific and medical approaches are essential to helping people — especially those affected by rare diseases👇

🎤 Our President @flaviagalletti.bsky.social and Uwe Korst, Co-founder and Board Member of PKD International, share their thoughts from the #ERKNet Meeting currently underway in Leuven! 🇧🇪 💛 We’re very happy and proud to be here. #PKDInternational #ARPKD #ADPKD @erknet.bsky.social

Interesting update from Prof Franz Schaefer on #ERKReg. Take home message: #genetic diseases have fast track towards kidney failure (right side of chart) #ARPKD #ADPKD @pkdinternational.bsky.social

#PKDKnowledge Ep. 2, Prof. @muellerrom.bsky.social @unicologne.bsky.social #Openscience it’s a powerful engine for progress.💡 It unites experts, and fuels innovation across Europe. Open Science → Better Research → Better patient outcome #ADPKD #OSCARSproject #TogetherForPKD

#PKDKnowledge Ep. 2 Prof. @muellerrom.bsky.social @unicologne.bsky.social shares why #Openscience isn’t just a concept — it’s a catalyst. 🧠 “It connects expertise and drives progress across the EU". #OpenScience=Better Science=Better Care @oscarsproject.bsky.social #ADPKD #TogetherForPKD

#PKDKnowledge - Ep. 2, @flaviagalletti.bsky.social shares a clear message: 🗣️ “ #OpenScience is sharing knowledge to build a more inclusive picture and reach better results, faster.” 🇪🇺 The @oscarsproject.bsky.social is piloting this new way of working #ADPKD #CollaborationInScience #PatientAdvocacy

🎥 Introducing our new video series: #PKDKnowledge Bite-sized insights into #ADPKD, #Research, & #OpenScience. 🎬 Episode 1 is out now! Prof @muellerrom.bsky.social errom.bsky.social (University of Cologne) kicks off our journey #PatientEngagement @oscarsproject.bsky.social 📢 Watch, learn, and share!

1/10 We were delighted to discuss the first ever @KDIGO ADPKD guidelines this March! So satisfied with the chat itself that we forgot to post the #TenPostsNephJC 😉 So here we are! Better late than never.#NephJC kdigo.org/guidelines/a...

🇪🇺 Flavia Galletti will be attending the EURORDIS Membership Meeting 2025 on behalf of AIRP (Associazione Italiana Rene Policistico) helping to strengthen the PKD voice within the EURORDIS community. 🌷 #PKDInternational #ADPKD #ARPKD