New toolkit supports Wilson’s disease advocates’ call for policy change to improve care
15 July 2024
With proper treatment, people with Wilson’s disease can live long, healthy lives. However, they often experience unacceptable gaps in care and systemic barriers that prevent them from accessing support.
As secretariat to the Wilson’s Disease Policy Network, The Health Policy Partnership (HPP) is proud to have supported the development of a new toolkit, which will help the Wilson’s disease advocates drive the policy changes needed to improve care.
The Wilson’s disease community plays a crucial role in supporting the needs of people living with the condition. And the toolkit, developed by members of the multi-stakeholder Network, equips advocates around the world with information, templates and other resources to help them communicate those needs to policymakers.
Also included in the toolkit are case studies from around the world, demonstrating successful campaigns to increase awareness of Wilson’s disease through advocacy, public outreach and fundraising.
The toolkit builds on the Network’s previous work in 2023, Policy brief on Wilson’s Disease, which outlined six priority policy areas that need to be addressed to ensure everyone living with Wilson’s disease could access the care and support they need. Those policy priorities were endorsed by eight scientific and patient organisations, including the Global Liver Institute and the European Liver Patients’ Association.
The Wilson’s Disease Policy Network was formally established in 2022 and is led by a steering committee. It consists of a multidisciplinary group of people living with Wilson’s disease as well as health professionals in Europe.
