PKD International

@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

883 Following 1.2K Followers 2.1K Posts

Latest posts 5

PKD International @PKD_Int Oct 29

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.

pkdinternational.org/news-and-event…
#ADPKD #ARPKD

www.pkdinternational.org Leuven 2026: Research and Patient Voices Research advances raise new choices for people living with PKD.

PKD International @PKD_Int Oct 28

🧵💙 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.

PKD International @PKD_Int Oct 23

🧵🥣 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.

PKD International @PKD_Int Oct 21

🧵Behind every diagnosis is a person with a story worth hearing.
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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/l…

PKD International @PKD_Int Oct 19

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…

link.springer.com 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...