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.

sister, mother, dad and son on dad's shoulders walking in the woods in Autumn

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.

What we’ve achieved

The Heath Policy Partnership acts as secretariat to the Network, which was formally established in 2022 and is led by a multidisciplinary steering committee. This group of experts has been working closely together to develop a policy brief on Wilson’s disease, due to be launched at an event in Brussels in early 2023.

Key partners and stakeholders

We are grateful to the following members of the Network’s steering committee, who guided the development of the policy brief:

  • 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
  • Matthias Heck, Senior Director of International TA Policy Strategy/Government Affairs and Policy, Alexion Pharmaceuticals, Brussels, Belgium
  • 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
  • Caroline Roatta, patient representative, Association Bernard Pépin pour la Maladie de Wilson (Bernard Pépin Association for Wilson’s Disease), Paris, France
  • 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 The Health Policy Partnership 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 is currently solely funded by Alexion.

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