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.
Genetic Alliance UK is the national charity of over 150 patient organisations supporting all those affected by genetic conditions.
Their aim is to improve the lives of people affected by genetic conditions by ensuring that high quality services and information are available to all who need them.
The PKD Charity is a member of GA UK.
The ESPRIT Group is committed to ensuring effective and safe treatment of transplant patients. The Group first came together in 2000 to educate healthcare professionals and patients on the importance of appropriate brand prescribing, the first focus being on the immunosuppressant ciclosporin.
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.