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Coronavirus (COVID-19)

About COVID-19 and inherited metabolic disease

COVID-19 is a new illness that can affect your lungs and airways. It's caused by a virus called coronavirus. It is particularly important for people with a weakened immune system to take care at this time and that may include patients with MPS, Fabry or a related condition. Please follow health and information advice from the NHS and government websites and see the latest advice for those living with an inherited metabolic disease published by the British Inherited Metabolic Disease Group (BIMDG). This site offers the latest guidance on shielding and protecting people who are clinically extremely vulnerable from COVID-19. 

Access to critical care​


We are aware that some families have been concerned about access to critical care during the COVID-19 outbreak. NICE have amended their guidelines, which now state that access to critical care for those people aged less than 65 years with learning disabilities and/or stable long term disabilities should be assessed on an individual level and that the Fragility Scale should not be part of that assessment.

Useful links


For parents

For sibling support

COVID-19 info and resources



Our helpline is open 9am-5pm

Monday-Friday: 0345 389 9901

Out of hours support line open

5pm-10pm Monday-Friday and 9am-5pm weekends: 07712 653 258

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