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Launch of the European ADPKD Forum Report: Translating science into policy to improve ADPKD care

The European ADPKD Forum (EAF) is a multidisciplinary, international faculty of experts dedicated to improving the health and quality of life of people with autosomal dominant polycystic kidney disease (ADPKD).

European ADPKD Forum Faculty

The EAF Faculty comprises leading patient advocates together with practitioners and researchers from the fields of nephrology, hepatology and genetics.

On 29 January 2015, the EAF launched its first report, the EAF Report (English). This report is based on the latest scientific knowledge about ADPKD and insights from leading experts and patient advocates. It also features results from recent surveys of patients. The report was launched in Brussels at a meeting attended by patient advocates, representatives of various health stakeholder organisations, European Union officials and ADPKD experts.

The Report aims to:

  • Explain ADPKD and raise awareness of the disease and its implications for patients, health services and economies in Europe — issues that are often under-recognised by many health stakeholders and policymakers.
  • Recommend strategies to improve ADPKD care within the context of health policy development at the European and national levels.
  • Encourage and facilitate collaboration between those individuals and groups involved in the management of people with ADPKD, including health policy-makers, healthcare providers, payers, patients, caregivers and industry.

The Report is endorsed by PKD International and EGAN, the Patient Network for Research and Health. It was developed in alignment with the Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference Report on ADPKD (Kidney International, in press). The report is accompanied by the EAF Brussels Declaration (English), which encapsulates the EAF recommendations and their rationale.

The EAF Report is available in: DanishDutchFrenchGermanItalianSpanishSwedish and Turkish, in addition to English.

The Brussels Declaration is available in: DanishDutchFrenchGermanItalianSpanishSwedish and Turkish, in addition to English.

The Brussels Declaration is supported by the following organisations:

  • AIRG Belgique (Association pour l’Information et la Recherche sur les maladies Rénales Génétiques – Belgique)
  • AIRG España (Asociación para la Información y la Investigación de las Enfermedades Renales Genéticas)
  • AIRG France (Association pour l’Information et la Recherche sur les maladies Rénales Génétiques – France)
  • AIRG Suisse (Association pour l’Information et la Recherche sur les maladies Rénales Génétiques – Suisse)
  • AIRP (Associazione Italiana Rene Policistico)
  • ALCER (Federación Nacional de Asociaciones para la Lucha Contra las Enfermedades del Riñón)
  • PKD France
  • British Kidney Patient Association
  • European Association of Urology
  • EFIC (European Pain Federation)
  • EKHA (European Kidney Health Alliance)
  • European Kidney Patients’ Federation (EKPF)
  • European Kidney Transplant Association (EKITA)
  • European Society of Hypertension (ESH)
  • European Society of Human Genetics (ESHG)
  • European Society for Paediatric Nephrology (ESPN)
  • European Society of Radiology (ESR)
  • Federation of European Associations of Patients affected by Renal Genetic Diseases (FEDERG)
  • Gyvastis (Lithuania)
  • Irish Kidney Association (IKA)
  • Kidney Research UK
  • Munuais- ja maksaliitto (Finnish Renal and Hepatic Association)
  • National Kidney Federation (UK)
  • Nierpatiënten Vereniging Nederland (Dutch Kidney Patient Association)
  • Nyreforeningen (Denmark)
  • PKD Charity (UK)
  • PKD Familiäre Zystennieren e.V. (Germany)
  • PKD Foundation (US)
  • PKD Foundation Australia
  • Sociedad Española de Nefrología
  • Swiss PKD
  • Turkish Society of Nephrology

Report overview

The EAF report is structured as follows:


  • Prof. Norbert Lameire (Belgium), Emeritus Professor of Medicine, Ghent University, Ghent, Belgium and Past Chair, European Kidney Health Alliance (EKHA)
  • Dr Soledad Cabezón, Member of European Parliament

Section 1 – Introduction

Section 2 – ADPKD: an overview
Briefly explains the epidemiology and genetic basis of ADPKD, the signs and symptoms, how disease progression occurs, and approaches to its diagnosis, assessment and management.

Section 3 – What does ADPKD mean for patients and families?
Explains how ADPKD and its treatment negatively affects patients, including the impact on quality of life, relationships and working lives, and how this is often under-recognised.

Section 4 – Impact of ADPKD on healthcare systems
Presents recent data on the contribution of ADPKD to healthcare resource usage and costs.

Section 5 – Unmet needs in ADPKD care
Identifies barriers to optimal diagnosis, assessment and treatment of ADPKD.

Section 6 – Therapeutic innovation in ADPKD
Discusses challenges to research and innovation in ADPKD.

Section 7 – Empowering patients with ADPKD
Explains why and how patients with ADPKD need to be empowered to help improve standards of care.

Section 8 – EAF policy recommendations
Recommends strategies to improve ADPKD across Europe in context with relevant European Union policy initiatives.

Section 9 – European ADPKD Forum members

Section 10 – Polycystic kidney disease organisations

Section 11 – Glossary

Section 12 – References

EAF faculty


  • Dr Richard Sandford, Cambridge University, UK
  • Tess Harris, PKD International


  • Prof. Dr Olivier Devuyst, University of Zurich, Zurich, Switzerland

  • Prof. Tevfik Ecder, Istanbul Bilim University, Istanbul, Turkey

  • Dr Ron T. Gansevoort, University Medical Center Groningen, Groningen, Netherlands

  • Dr José Luis Górriz, Hospital Universitario Dr. Peset, Valencia, Spain

  • Prof. Albert Ong, University of Sheffield, Sheffield, UK

  • Prof. Yves Pirson, Université catholique de Louvain, Brussels, Belgium

  • Prof. Vicente Torres, Mayo Clinic, Rochester, MN, USA

  • Prof. Gerd Walz, University Hospital Freiburg, Freiburg, Germany


  • Prof. Joost Drenth, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands

Patient advocacy

  • Brenda de Coninck, Dutch Kidney Patient Association (NVN), Bussum, Netherlands
  • Tess Harris, PKD International
  • Alastair Kent, Patients Network for Medical Research & Health (EGAN), London, UK


  • Dr Richard Sandford, Cambridge University, UK

Sponsorship of EAF

The EAF was initiated by, and is solely supported by, Otsuka Pharmaceutical Europe Ltd. Neither the Co-Chairs of the EAF, nor the Faculty members, receive fees in respect of their roles in the initiative. The contents of the EAF Report are the opinions of the EAF Faculty and do not necessarily represent those of Otsuka.

Tess Harris