🧵💬 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.

🧵☀️ 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.

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

PKD International @pkdinternational.bsky.social · 4mo ago

🧵 💙 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.

🧵 🧪 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!

ERKNet - European Reference Network for Rare Kidney Diseases@erknet.bsky.social · 4mo ago

𝐄𝐑𝐊𝐍𝐞𝐭 𝐀𝐧𝐧𝐮𝐚𝐥 𝐌𝐞𝐞𝐭𝐢𝐧𝐠 2026 🇫🇷  Our 10th Annual Meeting concluded one week ago today. We could not be happier with the feedback, the results and the follow-up ideas and projects. Thank you so much to everyone that joined, we can't wait to see everyone again in 2027 in Heidelberg 💙

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! 🫶🏽

PKD International @pkdinternational.bsky.social · 5mo ago

🧵 (3/3) 🌍 Your input will directly contribute to research across Europe. Take part now: Scan the QR code or follow the link → choose your language → complete the survey 💛 lnkd.in/d2-S6rXi @flaviagalletti.bsky.social @uniklinikkoeln.bsky.social @muellerrom.bsky.social @oscarsproject.bsky.social

🧵 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 💛

PKD International @pkdinternational.bsky.social · 6mo ago

Happy Easter from PKD International To all our members, and to the entire global PKD community — patients, families, healthcare providers and our partners— we send our warmest wishes for this holiday season. 💛

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.

PKD International @pkdinternational.bsky.social · 6mo ago

🧵🧪 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.

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 💛🌷

PKD International @pkdinternational.bsky.social · 6mo ago

💙 World Kidney Day | Kidney Health for All 👉 On this World Kidney Day, voices from the global PKD community come together to share a clear message: Kidney Health for All means equal access to care for everyone affected by PKD. #PKDInternational #WorldKidneyDay

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 🌷

PKD International @pkdinternational.bsky.social · 7mo ago

💛 Today, February 28, is @rarediseaseday.bsky.social 🧬 It is a global moment to shine a light on rare diseases — and on the urgent need for earlier diagnoses, appropriate care pathways, continued research, and sustained support for patients and families. #PKDInternational

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

il Post@ilpost.it · 7mo ago

Cosa vuol dire davvero donare gli organi

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

so many good ideas to keep healthy with good food!

PKD International @pkdinternational.bsky.social · 7mo ago

🥗 Meal planning with #PKD can be challenging. That’s why we are highlighting Love Your Kidneys II: A Week of PKD-Friendly Meals, a guide from the PKD Foundation of Canada designed to turn nutrition guidance into a practical, everyday plan 👉 www.endpkd.ca/love_your_ki...

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!

PKD International @pkdinternational.bsky.social · 8mo ago

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...

🎥 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...

🌷💛

PKD International @pkdinternational.bsky.social · 7mo ago

🌍 PKD International joins @rarediseaseday.bsky.social to amplify the voices of people living with ARPKD around the world and to reaffirm a clear message: awareness is the first step toward change — in research, in care, and in quality of life. www.rarediseaseday.org #PKDInternational

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 🫶🏽

PKD International @pkdinternational.bsky.social · 8mo ago

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! 🎊

PKD International @pkdinternational.bsky.social · 8mo ago

💛 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

✨ 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.

TheRaCil Project@theracilproject.bsky.social · 10mo ago

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...

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

PKD International @pkdinternational.bsky.social · 10mo ago

💬 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

#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...

Register Now!

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

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