🧵 🧪 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.

If you are a patient or caregiver living with a ciliopathy, your voice matters. Help shape the Cilia27 Patient Day in Milan (8–9 March 2027) by completing this short survey 👇 forms.office.com/Pages/Respon... #Ciliopathies #ARPKD #RareDiseases #PatientVoice #Research @pkdinternational.bsky.social

Thank you so much for giving us the opportunity to speak on behalf of the patient community. It was as usual a very stimulating experience!

Your voice matters 💛 #ADPKD patients we need as many responses as possible to strengthen advocacy and research. The survey is available in multiple languages (select via the drop-down in the link) in 🪡 4! 🫶🏽

🧵 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

🧵🧪 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.

Wishing you all a peaceful , hopeful holiday time 💛

A very interesting time for #ADPKD ! It's especially exciting to see a large trial on #SGLT2 inhibitors now underway for ADPKD patients — a group not included in previous studies.

The #PKD Community is coming together worldwide to celebrate #WorldKidneyDay ! Polycystic Kidney Disease is an inherited genetic disease of the kidney that can also affect other organs and blood vessels. #KidneyHealthforAll means equal access to care for everyone affected by PKD wherever they are 💛🌷

It’s important to highlight that 72% of #Raredisease are genetic and 70% of these start in childhood. #ARPKD is one of them and there is no cure. We need more research and shared pathways to improve the life of these children 🌷

Un Grazie a il Post per questa eccellente puntata sulla donazione di organi e trapianto , veramente ben spiegato!

Ahead of @rarediseaseday.bsky.social , we are honoured to share Andrea’s story, a father of three children — two of whom live with #ARPKD. 🔗 Read the full article on the PKD International website: pkdinternational.org/news/79-strong…#PKInternationalal

so many good ideas to keep healthy with good food!

I am so grateful to PKD Charity for this initiative. It warms my heart to see Tess being able carry on her mission even beyond her time on this planet: supporting research and working for a better treatment options for all people living with PKD. She would be very proud of this!

🎥 Confidently Navigating #ADPKD: Women & Children – Special Considerations In this webinar, organized by the @pkdfoundation.bsky.social, key aspects related to women’s health, family planning, and the management of ADPKD in pediatric care are explored. ▶️ www.youtube.com/watch?v=Z7Yc...

🌷💛

It warms my heart to see how Tess is still supporting patients and researchers in so many ways... she would be very happy about it . Thanks PKD Charity UK to enable this 🫶🏽

I m very happy to see the family slowly growing in new areas and I’m looking forward working with Bill! 🎊

✨ As the year comes to a close, we would like to send our heartfelt wishes to the global PKD community. 💙 May 2026 bring meaningful progress and confidence in the future for everyone. 🎆 Wishing you all a peaceful and hopeful New Year. #PKDInternational #NewYear

💛 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...

🫶🏽🌷

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

🫶🏽

We are monitoring the situation with keen interest