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COVID-19 coronavirus information

Developing information on the COVID-19 pandemic

When visiting this page please ALWAYS refresh your browser window in case there has been an update since you last visited.

30 MARCH 2020

Registering if extremely vulnerable

For those that have been identified as extremely vulnerable to the coronavirus COVID-19, you are now able to register for help and support. The government wants you to still rely on friends and family in the first instance, but for those who can’t this enables you to register for help for things such as deliveries from supermarkets and pharmacies, and for support from voluntary groups.

Whilst this link is for those in England, the web page also gives links to guidance for those in Northern Ireland, Scotland and Wales.

Go to the Government web site to register.

26 MARCH 2020

Update from Ultragenyx

A reassuring update from Ultragenyx for anyone on their medications or in one of their trials, with contact details should you have any questions.

Download update from Ultragenyx.

25 MARCH 2020

Advice from LSD centres re Pompe

On 25 March 2020 a mailing was sent by AGSD-UK to everyone affected by Pompe disease (GSD2). This contained advice which has been created by all the LSD Specialist Centres in the UK, regarding homecare and clinical support. There is different advice for adult and paediatric cases. Copies are available to download here. Please get in touch if you need help.

Download Adult advice from the LSD centres.

Download Paediatric advice from the LSD centres.

25 MARCH 2020

Update on McArdle’s

We have an update regarding NHS letters sent to some (not all) people with McArdle’s.

Go to the McArdle’s COVID-19 page.

25 MARCH 2020

Advice from AGSD-UK

We have compiled advice from the NHS, WHO and the BIMDG to help the AGSD-UK community stay as safe as possible. Issued by AGSD-UK on 25 March 2020 via email to everyone in the UK with an email address registered with us.

Download a PDF of the mailing.

23 MARCH 2020

BIMDG webinar presentation

The BIMDG webinar held on Monday 23 March 2020, on inherited metabolic diseases and COVID-19, is now available as a video recording to watch on YouTube – running time 1 hour 13 minutes. There is a lot of general information, and GSDs 2 and 3 are mentioned more specifically.

Go to YouTube video.

The slides of this webinar are available as a PDF – see button.

18 MARCH 2020

Guidance from BIMDG

Broad guidance onCovid-19 for people with any metabolic disease, such as GSD, is available from the British Inherited Metabolic Diseases Group (BIMDG). Last updated 18 March 2020.

Go to the BIMDG web site.

Slides of the BIMDG Webinar on 23 March 2020 – 55 slides, 6mb file.