Your stories

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
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
Rory's story-ASA

Video insight series

We believe in telling the real stories of people affected by Inherited Metabolic Disorders

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

Watch our patient stories by clicking on the Patient Insight Series that you’d like to see below:

Button: COVID-19
Button: Breaking down barriers
Button: Mental health and wellbeing
Button: PEG and transplants

Thank you to all our patients and families who have shared their stories Would you like to share your story?

By sharing your own personal experience of living, or caring for someone, with an IMD, you can make a difference by:

  • Helping others facing a similar situation to know that they are not alone
  • Encouraging patients and families to get in touch with Metabolic Support UK; we are here to help
  • Inspiring people to donate and fundraise for Metabolic Support UK, enabling us to continue providing our vital services.

If you’d like to get involved, we’d love to hear from you. Please contact Helen on helen@metabolicsupportuk.org

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