Coronavirus: Patient Insight Videos

During the coronavirus pandemic, the Inherited Metabolic Disorder patient community will be sharing their important but often unseen experiences of accessing routine healthcare, remote appointments, emergency care, clinical trials, managed access agreements and much more. Our aim is to empower, collaborate and advocate to ensure their needs are met during this long and uncertain road to recovery. Please click on the titles below to see insights of our community during this crisis.

Alex’s Story: The Impact of Lockdown on Adult Son in Supported Accommodation (Citrullinaemia)

Alison’s Story: Juggling Roles in Lockdown (HHH Syndrome)

Carl’s Story: Attending Routine Appointments during the Coronavirus Crisis (Pyruvate Kinase Deficiency (PKD))

Claire and Aaron’s Story: Returning to the “New Normal” (Maple Syrup Urine Disease (MSUD))

Daniel’s Story: Growing up with TMAU and the Importance of Patient Communities (Trimethylaminuria (TMAU))

Emma’s Story: Managing Care at Home whilst Shielding (Trifunctional Protein Deficiency)

Julia’s Story: Accessing Emergency Care during the Coronavirus Crisis (Ornithine Transcarbamylase Deficiency (OTC))

Laura and Will’s Story: The Impact of a Clinical Trial Being Suspended due to the Pandemic (MPS II)

Lucy’s Story: The Impact of Shielding on Care for a Child with Learning Disabilities (Pyruvate Dehydrogenase)

Mel’s Story: The Impact on a Managed Access Agreement in Lockdown (Hypophosphatasia (HPP))

If you would like to share your unique and important experience and insight as part of this series, please contact Jess on

If you need any further support, please contact us on or 0845 241 2173.