🌍 #PKDInternational connects experiences and knowledge worldwide, building a strong global community for people affected by PKD. 🤝 Your support strengthens international initiatives and amplifies patients’ voices. 💛 Donate here: www.pkdinternational.org/donate

Sometimes, the most difficult part of living with PKD is understanding how to manage it day by day. That’s why we are promoting the PKD Foundation of Canada’s campaign: “$10 for 10 months” — a simple yet meaningful way to support education, and research: conta.cc/4lPyWlv

🧵🎥 From Guidelines to the Clinic: Shared Decision-Making in ADPKD Care Clinical guidelines are essential tools in guiding care decisions in ADPKD — but how are they developed, and how can patients use them in real-life settings?

🧵 🧬 Help shape the future of ADPKD research Are you living with ADPKD? Your perspective matters. PKD International is part of the ARTICYST Project, a European initiative bringing together research centres and the patient community to improve the future of ADPKD research.

🧵 There are moments along the PKD journey that can feel especially challenging. As kidney function declines, questions begin to arise — about dialysis, transplantation, and what lies ahead. Facing this stage alone can feel overwhelming.

🧵We are pleased to announce that the UMCG - Universitair Medisch Centrum Groningen in the Netherlands is now officially accredited as a trial site for the STOP-PKD Study.

🧵🧪 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.

🧵 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

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. 💛

🧵🧪 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.

🧵🧪 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.

💙 PKD Membership | SwissPKD Today we highlight SwissPKD, a member organisation of PKD International, supporting people living with Polycystic Kidney Disease (PKD) and their families in Switzerland. 🔗 Learn more: www.swisspkd.ch/de/index.html

💙 PKD Connect | PKD Charity UK An online support group for people with reduced kidney function, focused on topics such as dialysis and transplantation—sharing experiences and feeling less alone. 🗓️ March 31, 2026 (Zoom, free) 🔗 bit.ly/LowMar26 #PKDInternational #ADPKD #ARPKD #PKDCharity

🥗 This month, in our #PKD & Food series, we are featuring Quinoa Tabule — a fresh and flavourful recipe, perfect for the spring season. 📘 This recipe was created by the Riñón Poliquístico de México A.C. and authored by Ana Sofia López and L.N. Ari Cisneros.

March is Kidney Health Month | Last days to take action In these final weeks of #KidneyMonth, let’s keep raising awareness about kidney health and PKD. Check out “31 days of pkd” by PKD Canada: daily content to inform and support the community 👉 bit.ly/41fnnuq

💙 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

AIRG-E. Asociación Información Enfermedades Renales Genéticas hosted its 21st Conference on Genetic Kidney Disease, bringing together healthcare professionals, patients, and families to share knowledge, scientific advances, and lived experiences. 👉 www.youtube.com/watch?v=Jv9x...

💙 In one week, on March 12, 2026, we mark World Kidney Day, the global campaign dedicated to raising awareness of kidney health and the importance of prevention, early diagnosis, and equitable access to care. #PKDInternational #WorldKidneyDay #WorldKidneyDay2026 #ARPKD #ADPKD

💛 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

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

As @rarediseaseday.bsky.social approaches, we share Uwe Korst’s story — a powerful account of living with ADPKD. Selected by @jardinjointaction.bsky.social as a representative ERKNet patient story. Full story: jardin-ern.eu/patient-stor...

🥗 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...

PKD International warmly congratulates @muellerrom.bsky.social on this important new step. We are deeply grateful for his unwavering commitment to patient advocacy and for his continuous efforts to advance the interests of the PKD community.

🌍 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

In this webinar, organized by the PKD Foundation of Canada, CKD-associated pruritus (CKD-aP) and the available treatment options are explored in depth. ▶️ Watch the webinar on YouTube: www.youtube.com/watch?v=isnJ... #PKDInternational #CKD #PKDFoudationofCanada

Medical appointments can become challenging for people living with a chronic condition. In this article by PKD Australia , Nicki Scholes-Robertson shares practical advice on how to improve communication with healthcare teams: bit.ly/4rH5sIq

A healthy and balanced diet plays an important role in the day-to-day management of #PKD. The recipe we’re sharing today, created by Riñón Poliquístico de México A.C., is oatmeal pancakes. They’re made by blending oats, an egg, milk, baking powder, and a touch of vanilla.

🎥 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...

🧠 Living with a chronic condition such as #PKD can have a significant impact on mental health. In this webinar, organized by the PKD Foundation of Canada, the focus is on managing depression and anxiety. ▶️ Watch the webinar on YouTube: www.youtube.com/watch?v=b7Ev... #PKDInternational

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...

Autosomal Dominant Polycystic Kidney Disease affects more than just the kidneys. In this webinar, organized by the @pkdfoundation.bsky.social, the systemic impact of the disease is explored, including its effects on the heart, liver, bones, and metabolic health 📹 www.youtube.com/watch?v=biwC...

January is UK Liver Awareness Month. In PKD polycystic liver disease ( #PLD ) is common and often silent. Regular check-ups + healthy daily choices matter. We join PKD Charity UK to shine a light on liver health. 💚 #LoveYourLiver👇 pkdcharity.org.uk/news-events/... #ADPKD #ARPKD

💛 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

🎄 Merry Christmas to all of you from PKD International. #PKDInternational

🌍 Fundación Mexicana para el Riñón Poliquístico de México A.C. is part of the PKD International network. 🔗 Discover more: rinonpoliquistico.org #PKDInternational #ADPKD #ARPKD

✨ This Christmas, choose to give hope. 🔗 Donate today and support the PKD community: www.pkdinternational.org/donate #PKDInternational #PolycysticKidneyDisease #ChristmasGiving #ADPKD #ARPKD

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

From 27 to 28 November 2025 in Barcelona, the first edition of the ERA Science Meetings will take place. 👩‍⚕️ We are honored to announce that @flaviagalletti.bsky.social, President of #PKDInternational, will attend the event. 🔗 www.era-online.org/it/events/er... #ERAScienceMeetings

Eating Well with #PKD When Life Gets Busy: Simple Nutrition Tips 👩‍⚕️ In this new blog from the PKD Foundation of Canada, dietitian Emily Campbell, RD CDE MScFN, shares practical strategies to help you: www.endpkd.ca/eating_well_... #PKDInternational #PKDFoundationofCanada

At #PKDInternational, we are proud to partner with Njurförbundet, the Swedish Kidney Association — a national organization that supports people affected by kidney diseases, including polycystic kidney disease (#PKD). 🔗 Learn more: njurforbundet.se #ADPKD #ARPKD

📆 From 21 to 23 November 2025, the city of Málaga will host a new edition of the National Congress of Renal Patients, organized by the Federación Nacional de Asociaciones Alcer. 👉 Learn more: alcer.org/2025/11/04/c... #ALCER #RenalCongress2025 #PKDInternational

✨ 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 👇

On 16 November 2025, AIRG Belgique will host its Annual National Day — an important moment for the Belgian genetic kidney-disease community. 💬 The programme will include a personal testimony from an #ADPKD patient sharing their journey through a living-donor kidney transplant. #PKDInternational

💬 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 & @pkdfoundation.bsky.social: united for research and patients Founded in 1982, PKD Foundation is the only organization in the United States entirely dedicated to discovering treatments and a cure for polycystic kidney disease (PKD). 🔗 pkdcure.org/who-we-are

At #PKDInternational, we are working every day to unite patients, families, scientists, and healthcare professionals in the fight to end #PKD. But this mission is only possible with your help. 🙏 Your donation brings hope, strength and progress: pkdinternational.org/donate

🇨🇦 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...