Call for action on Wilson’s disease published

9 May 2023

The Wilson’s Disease Policy Network has launched an action statement calling on stakeholders to work together and take urgent measures to improve care for people living with Wilson’s disease.

The action statement arose out of a meeting that brought together key experts and stakeholders in Wilson’s disease, rare diseases and health policy. The event, held in Brussels on Rare Disease Day, was organised by the European Liver Patients’ Association and the Wilson’s Disease Policy Network.

The meeting generated valuable discussions on how gaps in care and policy barriers can impact health outcomes and quality of life for people living with Wilson’s disease. These conversations allowed the following priority actions to be determined:

  1.  European institutions should urgently support better coordination of data collection on Wilson’s disease.
  2.  Policymakers must address inequalities in access to best-practice care for people with Wilson’s disease across Europe.
  3.  Health system leaders must raise awareness of Wilson’s disease among key groups of healthcare professionals to increase the speed of diagnosis.
  4.  Policymakers, health system leaders, professional societies and patient associations should work together to address treatment non-adherence, especially among high-risk groups.
  5.  Policymakers, health system leaders and industry should ensure that cost is not a barrier to people with Wilson’s disease accessing the most appropriate treatments.

Now, the Wilson’s Disease Policy Network calls on policymakers, health system leaders, patient advocates and industry leaders across Europe to recognise the unmet needs of people living with Wilson’s disease and take the priority actions needed to address them. National governments, the European Parliament and the European Commission all have an important role to play.

Download the action statement