Flavia Galletti
- 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 🫶🏽
- We are immensely pleased to share that PKD Charity UK has established the Tess Harris Fellowship Fund, created to support researchers and accelerate meaningful progress in the treatment of #PKD. 🔗 To support the fellowship, you can donate here: cafdonate.cafonline.org/29607#!/Dona...
- I m very happy to see the family slowly growing in new areas and I’m looking forward working with Bill! 🎊
- 💛 We are pleased to share that the PKD International Board is expanding. Please join us in welcoming Mr Bill Wang from Hong Kong. We are honoured to have his voice and leadership, and look forward to working together to advance our mission worldwide. #PKDInternational
- Reposted by Flavia Galletti✨ 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.
- Flashback to our great Annual Meeting in Strasbourg 🥨 and the amazing welcome by Prof. Hélène Dollfus & team at the CRBS @inserm.fr @unistra.fr 🙏 to advisors Prof. Ronald Perrone & patient advocates @flaviagalletti.bsky.social, Kerry Leeson & Sandra Lawton 🙏 theracil.eu/events/secon...
- Reposted by Flavia GallettiA 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
- Reposted by Flavia Galletti📊 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
- Reposted by Flavia Galletti✨ 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
- 💬 Polycystic Kidney Disease (PKD) Charity UK offers free educational events, both in-person and online, open to people living with #ADPKD and #ARPKD, their families, and caregivers. 🔗 Discover upcoming events and get involved → pkdcharity.org.uk/support/educational-events #PKDInternational
- Reposted by Flavia Galletti#PKDInternational Board Update — November 2025 At our recent Board meeting we reviewed progress and agreed key priorities for the year ahead 👇
- Reposted by Flavia Galletti🇨🇦 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...
- Reposted by Flavia Galletti🔬 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 🌎
- 🌍 Welcome to our global PKD family! We’re thrilled to announce that on Friday, 26 September 2025, during its Board meeting, PKD International officially welcomed Riñón Poliquístico de México A.C. as our newest member. 🇲🇽✨ #PKD #PKDCommunity #PatientAdvocacy #GlobalCollaboration
- 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! 💛🌷
- Diagnosing #ARPKD in children is challenging. Now a urinary peptide pattern can help distinguish it from other kidney diseases 👉 theracil.eu/publications... @theracilproject.bsky.social #PKDInternational
- Reposted by Flavia Galletti🌟 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
- Reposted by Flavia Galletti💦 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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- ❤️ Today we celebrate 20 years of AIRP in Milan! PKD International President @flaviagalletti.bsky.social proudly represents us at this important event, standing with AIRP to support patients, raise awareness, and advance research. 💛 #PKDInternational #PKD #ADPKD #ARPKD
- Reposted by Flavia GallettiOn 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
- Reposted by Flavia GallettiIn 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.
- Reposted by Flavia GallettiResearchers 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
- 🌍 Today is #PKDAwarenessDay ! The global community comes together to raise awareness, share knowledge, and support one another. Throughout September, our members across many countries are hosting events and activities to shine a light on Polycystic Kidney Disease. #PKDInternational
- Reposted by Flavia Galletti🌍 On Sept 4, the global PKD community unites for #PKDAwarenessDay to raise awareness, support patients & push research forward. #PKDInternational #EndPKD #ADPKD #PKDResearch
- Reposted by Flavia Galletti💛 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
- Reposted by Flavia GallettiKDIGO 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 👇
- Reposted by Flavia GallettiMillions 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
- Reposted by Flavia Galletti🌞 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 👇
- Reposted by Flavia Galletti💬✨ 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...
- Reposted by Flavia Galletti📺 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
- Reposted by Flavia Galletti🎥🧪 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
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- 🎥🧪 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!
- 🎥🧪 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
- 🧬 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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- 🥳TheRaCil Publication Alert🚨 Visit theracil.eu/news-and-pub... for the latest findings on #ARPKD by our teams: predictive risk score at the age of 2 months, urinary peptide signatures and perspectives on polycystic kidney diseases in children. #cilia #kidney #kids
- We are monitoring the situation with keen interest
- ‼️Breaking News‼️ @novartis.bsky.social completed acquisition of Regulus Therapeutics, advancing #farabursen an investigational therapy targeting microRNA‑17 to slow cyst growth in #ADPKD 🔗 www.novartis.com/news/media-r...
- Reposted by Flavia GallettiNot to be missed! Two powerful life experiences
- Reposted by Flavia Galletti🌞 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
- Reposted by Flavia Galletti#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 👇
- Reposted by Flavia Galletti#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!
- We’re all set for the 62nd #ERACongress in Vienna, happening from Wednesday the 4th to Saturday the 7th of June! @flaviagalletti.bsky.social and Uwe Korst will be attending the event. Be sure to stop by the PKD International booth — Hall X.1, Booth X1.230. #PKDInternational
- 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! 🤝
- 🇪🇺 Our president @flaviagalletti.bsky.social is attending the @eurordis.bsky.social Membership Meeting 2025 on behalf AIRP (Associazione Italiana Rene Policistico), giving strength and voice to the PKD community within #EURORDIS. 🌷 #PKD #AIRP #EMM2025 #RareDiseases #PatientAdvocacy
- 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 🎉
- Reposted by Flavia Galletti@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👇
- Reposted by Flavia Galletti🎤 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
- Reposted by Flavia Galletti#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
- Reposted by Flavia Galletti#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
- Reposted by Flavia Galletti#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
- Reposted by Flavia Galletti🎥 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!
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- Reposted by Flavia Galletti🇪🇺 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
- Reposted by Flavia Galletti💛 Every donation brings us closer to a world without #PKD. Polycystic Kidney Disease affects millions of people globally — but together, we can change lives. 👉 Donate today and be part of the change: 🔗 pkdinternational.org/donate #ADPKD #ARPKD #PKDAwareness #PatientSupport
- Want to learn, connect, and exchange best practices to better advocate for the rare diseases community? Join me at #EMM2025 in Riga - I’d love to see you there! 🙋 Open to all in the rare disease community 🗓 22–24 May | 📍 Riga, Latvia 👉 go.eurordis.org/EMM25 #PatientVoice #RareDiseases #ARPKD
- Reposted by Flavia GallettiAs we mark this season of hope and renewal, PKD International extends our warmest wishes for Easter to all individuals, families, and partners in the PKD community around the world. #PKDInternational #TogetherForPKD #PKDCommunity #StrongerTogether #ADPKD #ARPKD
- Fiera di essere stata parte di questo percorso 🌷
- We’re proud to introduce one of our member organisations: @AIRPonlus is the Italian association for patients affected by all forms of #PKD. It raises awareness, supports patients and their families, promote research and work to improve care and quality of life. #PKDInternational #ADPKD #ARPKD
- Ennesima eccellente puntata di “ci vuole una scienza” che sviscera sapientemente l argomento 👇🏽 qui sotto e non solo quello. Viva! gift.ilpost.it/free-gift-17...
- Reposted by Flavia GallettiAutosomal dominant polycystic kidney disease (ADPKD) is the most common genetic kidney disease worldwide and is characterized by progressive development of kidney cysts. This review discusses ADPKD diagnosed in adulthood. ja.ma/4c2E9lm
- Reposted by Flavia GallettiZystennieren Symposium - 2 April 2025 - Uniklinik Köln & PKD Familiäre Zystennieren The Symposium will take place- an opportunity to: ☑️ Share the latest scientific discoveries ☑️ Explore new therapeutic possibilities ☑️ Foster dialogue between patients, physicians and researchers
- 🌍Today is #WorldKidneyDay! When was the last time you checked your kidneys? Understanding risk factors & monitoring your #KidneyHealth can help protect your life. At your next doctor’s visit, ask to check your kidney values! Early detection saves lives! #WorldKidneyDay2025 #AreYourKidneysOK
- WORLD KIDNEY DAY | KNOWLEDGE IS POWER On @worldkidneyday, our President Flavia Galletti reminds us of the critical need for kidney disease awareness. #WorldKidneyDay2025 #AreYourKidneysOK #pkdinternational #KidneyHealthmatters #ADPKD #ARPKD
- Small #lifestyle 🌷 changes can make a BIG difference in protecting your kidney health 🩺 all while supporting your family members living with kidney disease 💛 Are your Kidneys OK? #WorldKidneyDay2025 #ADPKD #ARPKD #StrongerTogether
- 🩺 At risk of Polycystic Kidney Disease (PKD)? Protect your kidney health with these steps! 🥗 Eat a low-sodium diet 💧 Stay hydrated 🏃♂️ Exercise regularly Small changes can make a big impact. Learn more: pkdinternational.org #PKDInternational #WorldKidneyDay #KidneysMatter #ADPKD #ARPKD
- Happy #Internationalwomensday to all the strong #ADPKD women’s and to all the women who support #ARPKD or #ADPKD families: you are our rock! 🌷
- 🌸 #InternationalWomensDay: Celebrating the strength, hope & resilience of women with #ADPKD! 💜 Knowledge is power! Stay informed & take charge of your health. 💪The @kdigo.org 2025 Guidelines includes a section on women’s health, reproductive & hormonal care. 🔗 Read more: KDIGO 2025 ADPKD Guidelines
- Reposted by Flavia Galletti10 days to go! 🔟 PKD International proudly supports World Kidney Day 2025! 💛 This year’s theme is "Are Your Kidneys OK? Detect early, protect kidney health." Let’s raise awareness and take action for better kidney Health! #WorldKidneyDay #AreYourKidneysOK #ARPKD #ADPKD
- Reposted by Flavia Galletti🚨 Today is #RareDiseaseDay! 🚨 #ARPKD is a rare, life-threatening genetic kidney disease affecting children from birth. We estimate that 7,500 babies are born with it each year—yet there’s no cure, no approved treatment, and little to no research. #KidneyHealth #StrongerTogether
- 🚨 Today is #RareDiseaseDay! 🚨 We stand together to raise awareness for Autosomal Recessive Polycystic Kidney #ARPKD a rare genetic condition affecting children from birth. To all affected: You are not alone. Your strength drives change. #StrongerTogether @pkdinternational.bsky.social
- 👏 Great work from paediatric nephrology! A new study introduces a risk score to predict kidney progression in #ARPKD. With data from 658 patients, this could help improve care & decision-making. Congrats to all authors! 💛 pubmed.ncbi.nlm.nih.gov/39922379/ @kidneyint.bsky.social
- E dopo l’ultima puntata di “Tienimi Bordone” propongo @matteobordone.bsky.social patrimonio dell’Unesco: applausi, commozione e volano i reggiseni come a woodstock. Gaudeamus! gift.ilpost.it/gift-1740550...
- We were honoured to join the "Patient Consensus Summit for Rare & Chronic Kidney Diseases" and the European #Kidneyforum2025 bringing PKD patients' voices to policymakers, experts & advocates. Let's prioritise Kidney Health in the EU agenda! #ADPKD #ARPKD fb.watch/xwIVUtZfN5/
- This is one of those rare moments when dedication, effort, and passion align. So much valuable information for patients, so much to take in! 📚💡 Every bit of this engagement drives change, improves lives, and makes a real impact. #Gratitude #ADPKD #ForThePatients #MakingADifference #Transplant
- Many patients with ADPKD undergo nephrectomy but guidance on indications and procedures were missing. This consensus statement provides this guidance based on an systematic review and Delphi survey as a useful addition to the recent KDIGO guidelines. academic.oup.com/ndt/advance-...
- This week we joined experts & policymakers in Brussels at the #KidneyForum2025 to push kidney health higher on the agenda. The “Five Key Recommendations” were presented at the @europarl.europa.eu ! 🇪🇺 💬 @theisn.org @erknet.bsky.social
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- 🎉 Finally, the first-ever #ADPKD guidelines ! This is the result of 10 years of collaboration among doctors, researchers & patient associations, this is more than a guideline —it’s evidence-based support, confidence, and hope for millions of patients @PKD_Int
- 1️⃣ We are pleased to announce the publication of the KDIGO 2025 ADPKD Guideline! This first-ever KDIGO guideline focused on a rare kidney disease provides practical tools to improve diagnosis, care, and treatment. Read the news release: kdigo.co/2025-ADPKD-G... #ADPKD
- I have so much to be grateful for this holiday: patients, colleagues, PKD_Int , AIRP, Federg, ERKNET, and the whole scientific community. I’m holding Tess in my heart, she continues to inspire and guide me. 💙 Here’s to hope for remarkable advancements in 2025. 🎄 Merry Christmas & Happy New Year! 🌟
- 🎧 Don’t miss this episode of the Kidney Chronicle! Dr. Lisa @Guaywoodford , renowned expert on cystic kidney diseases, shares her insights into #ARPKD from the discovery of the gene to managing the condition. 🔗 open.spotify.com/episode/6cXb... #KidneyHealth #CysticKidney #PatientAdvocacy
- 🎙️Genetics & kidney disease made clear with Emilie Cornec-Le Gall ! 🧬 When to do genetic testing 🧩 Do you need a geneticist? ❓ What's a "variant of unknown significance"? I'm loving this month's "A Pinch of Salt" from @ERAkidney 🤩 youtube.com/watch?v=0lG8... 🌟
- 🎙️Tune in to the latest ERA podcast "A pinch of salt" with prof Roman Ulrich-Müller as he dive into the complexities of 🩺 #ADPKD vs multicystic #KidneyDisease 🧬 When and why to consider genetic testing💔Risks and breakthroughs in PKD care!🌟https://www.youtube.com/watch?v=BsUsTS7_DWU
- Piovono regali🎄Alcuni corsi online della @eurordis Open Academy sono finalmente disponibili anche in italiano! 🇮🇹 offrendo strumenti preziosi per accrescere competenze e conoscenze. #MalattieRare #Formazione #SostegnoAiPazienti #advocacy 👉https://openacademy.eurordis.org/i-nostri-corsi/
- “PKD International wrapped up an inspiring 2-day Board meeting! We set a bold vision for the next 3-5 years with plans to strengthen governance, elevate communications, and deepen connections with members. A new chapter begins—stay tuned for the journey ahead! #ADPKD #ARPKD
