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EURORDIS is a non-governmental patient-driven alliance of patient organisations representing over 500 rare disease patient organisations in 50 countries.
ARPKD (Autosomal Recessive Polycystic Kidney Disease) is a rare disease and the PKD Charity is a member of EURORDIS to represent ARPKD patients and families in the UK.
The Ciliopathy Alliance brings together patient support groups, researchers, doctors and allied health professionals representing patients and families living with and affected by ciliopathies - diseases caused by defects in the function or structure of cilia.
Cilia play essential roles during human development and dysfunctional cilia in the kidney has been associated with renal cyst formation and renal failure. Polycystic Kidney Disease is one of the most prevalent ciliopathies but cystic kidney are also seen in patients diagnosed with some of other, rarer ciliopathies.
The PKD Charity is a founder member of the Ciliopathy Alliance.
KDIGO is a global non-profit foundation dedicated to improving the care and outcomes of kidney disease patients worldwide.
They publish global clinical practice guidelines.
Scandalous treatment of vulnerable adults. https://t.co/Fk3CWCBmt0
PKD Charity UK
RT @finnigr: Looking forward to attending the first UK Kidney Patient Involvement & Partnership Network #KPIPN workshop tomorrow at Media C…
RT @UKRenalRegistry: Kidney transplantation: 22 of every 100 deaths due to heart attacks/ strokes yet big diff in blood pressure control be…
RT @UKRenalRegistry: @RenalAssoc @FionaCLoud @DamianFog @drpaddymark Ch 3. Demographic and Biochemistry Profile of Kidney Transplant Recipi…
RT @song_initiative: Very excited to meet our new @song_initiative representatives today!! @CKRRenal https://t.co/TAM7iGbU2i
by PKD Charity UK