Your stories

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

Our Patient Insight Series is a collection of videos and written accounts of 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 emergency care during the coronavirus pandemic, 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: Patient inight series
Button: Patient inight series

Share your story

By sharing your own personal experience of living with, 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.

Writing your story

If you would like to share a written account of your experience, we would love to hear from you.

We have prepared some simple guidelines, but if you would like to discuss your story with us we would be happy to write it up (you would have approval before it is published anywhere).

Please note that by sharing your story, you agree that we can use this on the website, social media and other materials as appropriate for the purpose of helping other families affected by IMDs.

Taking part in our video series

If you would like to take part in a video interview over Zoom with a member of our team, please get in touch! We will have a chat with you beforehand about your story and the questions we will ask, and make sure that you feel comfortable before filming. We will send you a copy of the recording for approval before publishing. 

If you would like to share your story, please contact our team for an informal chat.

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