Coronavirus: information and resources

We understand that people living with MPS, Fabry and related diseases are worried about coronavirus and how it might affect them so we have pulled together some sources of information and resources that you might find helpful.

 

Avoiding the virus

Public Health England have published some easy to understand guidance on protecting people most likely to get very poorly from coronavirus.

Read the guidance >>

The World Health Organisation have a list of clear and basic protective measures you can take to protect yourseld against the new coronavirus.

Visit the website >>

 

Mental health and wellbeing

Coffee and Share Flyer Design online.jpg

Online coffee and share – if you, or someone you care for, is affected by rare disease, grab a coffee and join the team at Same But Different every Thursday at 10am for a digital chat.

Join the chat >>

First Aid for Worry.jpg

First Aid for Worry is a sheet of ideas the clinical centres have put together to help you manage your worries at this troubling time when you may be feeling anxious. It gives useful ideas to try.

View the image >>

 

Charities offering support

For families with disabled children

Contact have some useful information and links for advice to help families with disabled children navigate through the confusion about the virus and its impact on them. They have collected it together in one place on their website to make it easy to find.

Visit Contact >>

 

Support for sick children

Wellchild have a wealth of information and tips on their blog to help sick children during the coronavirus, including ten ways to keep my child with complex needs safe and seven rules for managing carers at home.

Visit their blog >>

Financial and employment

HMRC have published guidance to help employees and businesses during the pandemic.

Read more >>

This video from Martin Lewis gives furlough advice and there is more information for seld-employed, businesses and employees and what they can do right now on the money saving expert website.

Visit money saving expert >>

 

Myth busters

 

There is a lot of information out there and not all of it from trust worthy sources. These sites help to dispell some of the myths around coronavirus.

World Health Organisation myth busters >>

BBC news myth buster video >>

 

Keeping busy

Whether you are on your own or looking after children, working or not, you need to stay busy to keep your sanity. Over the Wall, an amazing charity that offers empowering residential camps for children with serious illnesses has launched a programme of activities and challenges to be released three times a week on their Facebook, Twitter or Instagram pages. Look out for the challenges coming soon under the hashtags #MondayMayhem, #WellbeingWednesday and #FamilyFunFriday

Find out more >>
 

 

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

Sign up for our monthly newsletter below

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

  • Twitter - White Circle
  • Facebook - White Circle

0345 389 9901