International Rare Disease Consultation

The Cardiff and Vale University Health Board plan to lead a global Priority Setting Partnership (PSP) on rare diseases using the James Lind Alliance (JLA) approach. This process brings together patients, carers, and healthcare professionals to identify the most important unanswered research questions. A steering group of 20 international stakeholders, half of whom will be people with lived experience of rare diseases or their advocates will define the project’s scope. The PSP will take a broad, inclusive view, gathering research priorities from people of all ages and from low-, middle-, and high income countries