News

London, UK, 31 May 2014 – Today marks the formation of the European ADPKD Forum (EAF), a new multidisciplinary group of leading medical and patient group experts dedicated to improving the health and quality of life of people with ADPKD – a progressive and chronic genetic kidney disease.

The EAF initiative, co-chaired by Tess Harris, President of PKD International, and Dr Richard Sandford, Consultant Clinical Geneticist at Addenbrooke’s Hospital, Cambridge aims to:

• Increase awareness of the impact of ADPKD on patients and health services
• Recommend strategies at the health policy level to improve ADPKD care, based on the latest scientific evidence and expert insight
• Encourage and facilitate collaboration between the individuals and groups involved in the management of people with ADPKD.

ADPKD is a progressive and chronic systemic disease, for which there are no approved therapies, formal care pathways or clinical guidelines.^{1, 2} The condition, which accounts for 10% of all patients in end stage renal failure, is characterised by the development and expansion of fluid-filled cysts in the kidney, leading to a substantial increase in total kidney volume.^{1, 3, 4} Patients commonly suffer from acute and chronic pain, and cysts can affect other organs, notably the liver.^{1, 3, 4} Ultimately, ADPKD leads to kidney failure in the majority of affected people; approximately 50% of ADPKD patients will reach ESRD by age 59 and 75% will reach ESRD by age 70⁵.