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).
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.
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.
Weekly webinar series
During lockdown we organised a weekly Wednesday webinar on topics you might find useful from some familiar faces. Visit the weekly webinar page to discover more.