@PKD_Int

A Global Alliance of #PKD Patient Groups promoting research and improved care for everyone affected by #ADPKD and #ARPKD

 Worldwide
pkdinternational.org
Joined April 2011
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Who is left out of kidney research—and at what cost? Our Board member Bill Wang explores the “excluded middle” in #ADPKD and beyond, calling for research that reflects patients’ lives. Read his article in @SpringerNature’s Rare Kidney Diseases: doi.org/10.1007/s44531-026-0…

The rare, the common, the hope—including the excluded

Rare Kidney Diseases - Autosomal dominant polycystic kidney disease (ADPKD) occupies an ambiguous space that exposes the architecture of exclusion in rare disease policy. Prevalence estimates place...

link.springer.com
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🧵From 21 to 25 October 2026, the international nephrology community will gather in Denver, Colorado, for @ASNKidney Kidney Week 2026, one of the world’s leading meetings dedicated to kidney health, research and clinical practice.
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🧵 (5/6) 🌍 For the PKD community, ASN Kidney Week is an important opportunity to follow how scientific progress is shaping the future of ADPKD research, diagnosis and care, while bringing together clinicians, researchers and experts from across the nephrology field.
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🧵 (6/6) 🔗 Programme and registration: asn-online.org/education/kid… #PKDInternational #ADPKD #PKDResearch #KidneyWee

American Society of Nephrology | Kidney Week - Home

Kidney Week - ASN's annual meeting and scientific exposition, featuring advances in treatment, research, and technology in the fight against kidney disease.

asn-online.org
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🧵🧬 Help shape the future of ADPKD research: survey.uni-koeln.de/index.ph…
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🧵 (5/5) This survey aims to understand what matters most to people living with ADPKD and to support the development of future research and tools that are safe, ethical and patient-centred.
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@FLAVIAZH @MuellerRom @UKKoeln
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🧵 🧬 PKD is more than a diagnosis — it is a lifelong journey Living with polycystic kidney disease can mean navigating medical appointments, monitoring changes over time, making treatment decisions and adapting everyday life as individual needs evolve.
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🧵 (3/4) 💙 At PKD International, we work to connect the global PKD community, improve access to trusted knowledge and ensure that the experiences of patients and families remain part of the conversation around research and care.
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🧵 (4/4) Because understanding the condition is an important step towards feeling more informed, prepared and empowered. #PKDInternational #PKD #ADPKD #ARPKD #PKDAwareness #KidneyHealth #PatientEducation
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🧵🏃 Exercise with PKD | Running, sports, core workouts and more Can you run with PKD? What about HIIT, contact sports, strength training or core exercises?
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🧵 (2/3) A new article from the @endPKD explores some of the most common questions about exercising with PKD, highlighting how the safest approach can depend on factors such as kidney size, symptoms, blood pressure and individual tolerance.
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🧵 (3/3) 📖 Read the full article: endpkd.ca/exercise-with-pkd-… #PKDInternational #PKD #ADPKD #PKDLifestyle #ExerciseWithPKD #KidneyHealth #Wellbeing #PKDCommunity

Exercise with PKD: Running, Sports, Core Exercise, and More | PKD Lifestyle

Learn which exercises may be safe with polycystic kidney disease, including running, sports, core exercise, strength training, HIIT, and low-impact activities.

endpkd.ca
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