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.

Funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the granting authority. Neither the European Union nor the granting authority can be held responsible for them. This project has received funding from the European Union’s Horizon 2020 or Horizon Europe research and innovation programme under grant agreement No 945096.

Funded by the European Union