Coronavirus (COVID-19)

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).

Protecting people defined as extremely vulnerable

The government have issued new guidance on shielding for people, including children, who are at very high risk of severe illness from coronavirus (COVID-19) because of an underlying health condition, and for their family, friends and carers. They are strongly advising people with serious underlying health conditions (see list) which put them at very high risk of severe illness from coronavirus (COVID-19) to rigorously follow shielding measures in order to keep themselves safe.

 

You can register yourself if you have a medical condition that makes you extremely vulnerable to coronavirus.

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.

Webinar on coronavirus (COVID-19) and inherited metabolic diseases

The slides from the webinar are now available to view. We hope to have a recording of the full webinar very soon.

Useful links

 

For parents

For sibling support

Helpline

 

Our helpline is open 9-5pm

Monday-Friday: 0345 389 9901

Out of hours support line open

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

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Coronavirus:

information

and resources

We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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Registered Charity No.1143472 & SCO41012. Registered Company No. 7726882  

Images and stories may not be reproduced without express written permission. © 2019 Society for Mucopolysaccharide Diseases

MPS House, Repton Place, White Lion Road, Amersham, Buckinghamshire, HP7 9LP

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