National Patient Led Research Hub celebrates tenth anniversary
A national team based in Cambridge are celebrating ten years of helping people living with rare diseases to develop their own research ideas. The hub has received nearly 100 proposals spanning 75 conditions and close to 40 have gone on to become research projects including clinical trials and device development studies.
Established in 2015, the Patient Led Research Hub (opens in a new tab) (PLRH) works with rare disease patient groups across the UK. It is founded on the principle that people with lived experience have unique insights that should be used to inform research that improves understanding and care in ways that matter most to patients.
Around 1 in 17 people have a rare disease, over 3.5 million in the UK. People with rare diseases can face significant physical, mental, and emotional challenges with very little specialist help. Of nearly 11,000 known rare diseases, fewer than 5% have effective treatments and there is a significant need for better understanding and new therapies.
Vanessa Martin is a parent to a person living with a rare disease and started a project with the PLRH. She said:
We’re so lucky we found out about the hub. Working with the team has helped us to address a critical challenge in understanding patient need across the UK, which is a necessary step towards improving support for families. We would have been lost without the team’s support.
Full article: CUH news
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