@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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🧵🥣 PKD & Food | Pecan Granola An autumn recipe made with rolled oats, pecans, pumpkin seeds, chia seeds, flax seeds, cinnamon, applesauce and a touch of maple syrup. 🍎 Perfect for breakfast or as a snack: one serving provides 6 g of fibre and 5 mg of sodium.
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🧵(2/3) 🩺 For people living with PKD, portions and ingredients should be adapted to individual needs, ideally with guidance from a healthcare professional or renal dietitian.
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🧵 (3/3) 📘 Source: Love Your Kidneys: Planning PKD-friendly meals, with Emily Campbell and Roxanne Papineau, linked to the work of the @endPKD
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🧵Behind every diagnosis is a person with a story worth hearing. ⠀ We warmly invite you to read the personal story of Emily Petrides, Vice-President of the European Kidney Patients’ Federation (EKPF) and a longstanding friend of PKD International : era-online.org/publications/…
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🧵 (3/4) Stories like hers help others feel less alone and bring the realities of living with kidney disease into the wider conversation. ⠀ Thank you, Emily, for sharing your story and for your continued commitment to the kidney patient community.
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🧵 (4/4) Please take a moment to read her story: 🔗 era-online.org/publications/… ⠀ #PKDInternational #ADPKD @EKPFpatients @ERAkidney #PatientVoice #KidneyDisease #PatientAdvocacy
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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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