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Wilson’s Disease Policy Network

The Wilson’s Disease Policy Network is a European multidisciplinary alliance that aims to drive greater awareness, momentum and engagement from policymakers.

Wilson’s Disease Policy Network

Context

Wilson’s disease is a rare genetic condition which affects the body’s ability to metabolise copper, resulting in a range of potentially severe liver, neurological and psychiatric symptoms.

Neurological symptoms, in particular, can prevent a person from being able to work and can affect their ability to carry out everyday activities such as speaking, walking or writing. This can have a significant psychological and financial impact on people living with Wilson’s disease, their loved ones and carers.

If Wilson’s disease is diagnosed early and treated effectively, a person with the condition can live a long and healthy life. In reality, unacceptable gaps in care and systemic barriers prevent many people living with Wilson’s disease from accessing the care they need. As Wilson’s disease is rare, awareness among healthcare professionals can be low. This contributes to unnecessary delays in diagnosis, with misdiagnosis being a common problem. In addition, health systems often do not recognise, or are unable to coordinate, the full range of care and support services that a person living with Wilson’s disease may need to ensure they are treated, monitored and supported in a long-term, holistic way.

Project resources

Policy brief on Wilson's disease

Policy brief

Policy brief on Wilson's disease
Action statement

Action statement

Policy change for Wilson's disease action statement
Advocacy toolkit

Advocacy toolkit

Wilson’s disease advocacy toolkit

What we’ve achieved

HPP brought together a group of leading stakeholders to form the Wilson’s Disease Policy Network, which was formally established in 2022 and is led by a multidisciplinary steering committee. HPP acts as secretariat to the Network, coordinating the steering committee and leading all research, drafting and dissemination of Network outputs. The Network’s ultimate goal is to drive and support changes in policy that benefit people living with Wilson’s disease and their families.

The Network’s first public-facing resource is a policy brief, developed by HPP and the steering committee and launched at an event in Brussels in February 2023. The policy brief outlines six priority areas that must be addressed to ensure everyone living with Wilson’s disease is able to experience a high quality of life.

To support global advocacy efforts, HPP has developed the Wilson’s disease advocacy toolkit. This online resource, which is available in a range of languages, has been guided by the Network and aims to support Wilson’s disease advocates from around the world to achieve their goals and drive policy change

Key partners and stakeholders

We are grateful to the Network’s steering committee:

  • Clara Cavero-Carbonell, Head of Rare Diseases Research Unit, Foundation for the Promotion of Health and Biomedical Research in the Valencian Region, Valencia, Spain
  • Anna Członkowska, Professor of Neurology, Institute of Psychiatry and Neurology, Warsaw, Poland
  • Wieland Hermann, Chief Physician of Neurology, SRO AG, Spital Langenthal, Switzerland
  • David Martín Miguel, patient representative, Asociación Española de Familiares y Enfermos de Wilson (Spanish Association for Wilson’s Disease Patients and Their Relatives), Almeria, Spain
  • Robert Mitchell-Thain, Chief Executive Officer, PBC Foundation, Edinburgh, Scotland; Chair, Global Liver Institute Pediatric and Rare Liver Diseases Council, Washington, DC, US; Vice-Chair, Liver Patients International, Brussels, Belgium
  • Peter Ott, Professor Emeritus, Aarhus University, Aarhus, Denmark
  • Aurélia Poujois MD, PhD Neurologist, and National Coordinator of the Rare Disease Reference Centre for Wilson’s disease and other copper-related rare diseases, Paris, France
  • Professor Tudor Pop, European Society for Paediatric Gastroenterology, Hepatology and Nutrition
  • Sindee Weinbaum, Leader, European Liver Patients’ Association working group on rare liver diseases, Tel Aviv, Israel
  • Karl Heinz Weiss, Associate Professor, Gastroenterology, Salem Medical Center, Heidelberg, Germany

Project funding

This project is led by HPP in collaboration with a multi-stakeholder steering committee. All outputs are non-promotional, evidence based and shaped by the steering committee, which has ultimate editorial control. The project was initiated and funded by Alexion until December 2022, and is currently funded by Ultragenyx.

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