Submit your questions for the next LSD Collaborative webinar on 11 June

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.

Weekly webinar series

Every Wednesday during the coronavirus pandemic we aim to bring you a weekly webinar on topics you might find useful from some familiar faces.

Useful links

 

For parents

For sibling support

COVID-19 info and resources

Helpline

 

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

Stay up to date

 

Sign up to our monthly newsletter to hear about events, fundraising ideas and information and events specific to MPS, Fabry and related diseases.

Coronavirus:

information

and resources

Keep supporting us

We need your help more than ever before. With 1500 families across the UK that need our help and less opportunities to fundraise your support really counts.

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 Society

MPS House, Repton Place

White Lion Road, Amersham

Buckinghamshire, HP7 9LP

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