Patient Insight Library

Our Patient Insight Series is a collection of personal experiences by patients and families of living or caring for someone with an IMD.

These stories illuminate important and often unseen experiences, such as coping with the diagnosis of a rare condition, to accessing specialist care services, taking part in clinical trials and much more. Our aim is to empower patients and families by providing a platform for those affected to have their voice heard, by telling their story and sharing their personal experiences to help others facing similar challenges.

Button: Michael's story
Button: Sabrina's story
Rory's story-ASA
Button: Millie's story
Button: Samantha's story
Button: Alison's story
Button: Arthur's story
Button: Emma's story
Button: Florence's story
Button: Kate's story
Button: Rhiannon's story
Button: Cathy's story
Button: Emma's story
Button: Amelia's story
Button: Phoebe's story
Luca's story-PA
Button: Harriet's story
Dalila's story-Fighting for a diagnosis
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