Join the discussion on driving EU policy change for people living with rare diseases: a focus on Wilson’s disease
Seeking collaborator:
Seeking expertise:
With rare diseases firmly on the political agenda, now is the time to advocate for the needs of people living with rare diseases and their families.
European Liver Patients' Association (ELPA), A-TANGO partner, seeks to bring together key stakeholders from the rare disease landscape to raise awareness of current issues and discuss what could be done at the EU level to drive change for people living with Wilson's disease.
ELPA will draw on the experiences of people living with Wilson's disease – a rare disease that affects the body's ability to metabolise copper – as a case study. Through this lens, ELPA will discuss how care gaps and policy barriers can impact health outcomes and quality of life and the urgently needed changes.
Join leading European patient advocates, physicians and policy experts to discuss the change by registering your interest at https://bit.ly/3AW153y.
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 945096.
