PKD International

How can shared experiences shape better care for people living with PKD? Explore the interactive report of PKD International’s Global Members Meeting in Leuven: 11 chapters sharing patient perspectives on care, research and life with PKD. #ADPKD #ARPKD

🧵💙 There is no single way to live with PKD. For some, it may remain in the background for years; for others, it can shape everyday life, family, work, wellbeing and plans for the future.

🧵 (2/2) 🤝 Sharing experiences with people who understand the same challenges can offer support, reassurance and a strong sense of community. 🌍 Different stories. Different experiences. One global community. #PKD #PKDCommunity

🧵🥣 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.

🧵(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.

🧵 (3/3) 📘 Source: Love Your Kidneys: Planning PKD-friendly meals, with Emily Campbell and Roxanne Papineau, linked to the work of the @endPKD

🧵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 :

🧵 (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.

🧵 (4/4) Please take a moment to read her story: 🔗 ⠀ #PKDInternational #ADPKD @EKPFpatients @ERAkidney #PatientVoice #KidneyDisease #PatientAdvocacy

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:

🧵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.

🧵 (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.

🧵 (6/6) 🔗 Programme and registration: #PKDInternational #ADPKD #PKDResearch #KidneyWee

🧵🧬 Help shape the future of ADPKD research:

🧵 (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.

@FLAVIAZH @MuellerRom @UKKoeln