Working together to shape the future of rare disease research

Why Priority Setting Partnerships Matter

Health research has the greatest impact when it addresses the questions that matter most to patients, families, carers and healthcare professionals. However, research priorities have not always reflected the experiences and needs of those living with a condition or delivering care.

Priority Setting Partnerships (PSPs) help address this by bringing together people with lived experience, carers and healthcare professionals to identify and prioritise unanswered questions about health and care. By working collaboratively, PSPs ensure that future research is focused on the issues that are most important to the communities it aims to serve.

Formed by Wales Rare Disease Research Network and fundedby VPAG, our International Rare Disease Research Priority Setting Partnership is being delivered in collaboration with a range of organisations from across the rare disease, healthcare and research communities. 

Building rare disease research around your voice - Click here to join us in our global mission to gather research priorities for the future.