iiinova — where your digital self keeps evolving

Reposted by Flavia Galletti

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

Reposted by Flavia Galletti

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

Flavia Galletti @flaviagalletti.bsky.social · 26/05/2026

Come and meet us at the @pkdinternational.bsky.social Booth! When not in PKD sessions you ll find us there

010

Reposted by Flavia Galletti

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

Flavia Galletti @flaviagalletti.bsky.social · 21/05/2026

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

forms.office.com

Microsoft Forms

021

Flavia Galletti @flaviagalletti.bsky.social · 14/05/2026

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!

010

Flavia Galletti @flaviagalletti.bsky.social · 21/04/2026

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! 🫶🏽

110

Reposted by Flavia Galletti

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

Reposted by Flavia Galletti

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

Flavia Galletti @flaviagalletti.bsky.social · 05/04/2026

Wishing you all a peaceful , hopeful holiday time 💛

010

Flavia Galletti @flaviagalletti.bsky.social · 02/04/2026

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.

020

Flavia Galletti @flaviagalletti.bsky.social · 12/03/2026

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 💛🌷

010

Flavia Galletti @flaviagalletti.bsky.social · 28/02/2026

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 🌷

010

Flavia Galletti @flaviagalletti.bsky.social · 27/02/2026

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

010

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 27/02/2026

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… #PKInternational

031

Flavia Galletti @flaviagalletti.bsky.social · 26/02/2026

so many good ideas to keep healthy with good food!

010

Flavia Galletti @flaviagalletti.bsky.social · 24/02/2026

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!

010

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 06/02/2026

🎥 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...

021

Flavia Galletti @flaviagalletti.bsky.social · 31/01/2026

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 🫶🏽

010

Flavia Galletti @flaviagalletti.bsky.social · 17/01/2026

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

010

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 31/12/2025

✨ 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

041

Flavia Galletti @flaviagalletti.bsky.social · 09/12/2025

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

030

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 04/12/2025

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

051

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 02/12/2025

📊 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

052

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 14/11/2025

✨ 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

031

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 12/11/2025

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

031

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 31/10/2025

🇨🇦 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...

myemail.constantcontact.com

Email from PKD Foundation of Canada 2025 PKD Summit - November 5 & 6, 2025 Make a Donation Registration for our FREE virtual 2025 PKD Summit is now open! 2025 PKD Summit The PKD Summit is our annual o

031

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 17/10/2025

🔬 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

051

Flavia Galletti @flaviagalletti.bsky.social · 29/09/2025

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

010

Flavia Galletti @flaviagalletti.bsky.social · 26/09/2025

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! 💛🌷

020

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 23/09/2025

🌟 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

052

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 16/09/2025

💦 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...

331

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 19/09/2025

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

031

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 12/09/2025

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.

052

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 08/09/2025

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

041

Flavia Galletti @flaviagalletti.bsky.social · 05/09/2025

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

010

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 01/09/2025

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

031

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 01/08/2025

💛 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

051

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 29/07/2025

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 👇

052

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 25/07/2025

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

031

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 18/07/2025

🌞 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 👇

051

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 14/07/2025

💬✨ 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...

us02web.zoom.us

Welcome! You are invited to join a webinar: Shaping Kidney Care: Patient Partner Experiences. After registering, you will receive a confirmation email about joining the webinar.

How can sharing your story change the future of kidney care? Join us for this inspiring 1-hour webinar featuring the voices of four diverse PKD patients who have stepped up as patient partners - usin...

031

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 15/07/2025

📺 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

042

Reposted by Flavia Galletti

PKD International @pkdinternational.bsky.social · 01/07/2025

🎥🧪 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

031

Flavia Galletti @flaviagalletti.bsky.social · 01/07/2025

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!

020