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COVID-19 coronavirus information

Developing information on the COVID-19 pandemic

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23 JUNE 2020

Government’s updated advice on shielding

There is updated advice as of 23 June, taking into account that coronavirus COVID-19 infection rates have decreased significantly over the last few weeks. If you are shielding, when reading the update please remember to consider your personal symptoms, any other conditions you may have, the prevalence of cases in your area and your own needs and preferences. Follow our link below.

Go to the government’s updated advice on shielding.

19 JUNE 2020

Rare diseases: Risks and opportunities posed by COVID-19

RSM have a FREE webinar on Monday 22nd June from 12.30 to 13.35. You do not need to be a member to attend.

The webinar will bring together experts from different parts of the rare disease community: primary care, advocacy and medical genetics services. The panel will be discussing the ongoing issue of shielding advice including the real impact it’s having on rare disease families. Dr Elizabeth and Dr Menzies will be discussing their new online risk stratification tool.

Book your webinar place

9 JUNE 2020

COVID-19 webinar, 11 June

The next BIMDG webinar on COVID-19 is this Thursday, 11 June, 12.30 to 13.30. An expert panel will address the latest updates on COVID-19 and the next steps for patients. A recording will be available afterwards for anybody unable to join live. Use the lnk below to join the webinar and when prompted enter the password IMD2.

Join the COVID-19 webinar, 11 June, 12.30.

4 JUNE 2020

Grid to help assess risk and the need for self-isolation 

A grid has been made available by the British Society for Genetic Medicine and the Clinical Genetics Society as a guideline for clinicians and patients with rare genetic diseases, to help them decide on their degree of self-isolation. It is an amalgamation of COVID-19 risk advice from relevant specialities and BSGM’s COVID-19 statement. The purpose is to open a conversation with the patient’s primary physician – not replace individualised advice.

Go to the BSGM/CGS risk assessment grid.

1 JUNE 2020

Government’s updated advice on shielding

There is updated advice as of 31 May. If you are shielding, when reading the update please remember to consider your personal symptoms, any other conditions you may have, the prevalence of cases in your area and your own needs and preferences. Follow our link below. In particular, scroll down to the section headed “Staying at home and shielding”.

Go to the government’s updated advice on shielding.

1 JUNE 2020

Government’s updated advice on shielding

There is updated advice as of 31 May. If you are shielding, when reading the update please remember to consider your personal symptoms, any other conditions you may have, the prevalence of cases in your area and your own needs and preferences. Follow our link below. In particular, scroll down to the section headed “Staying at home and shielding”.

Go to the government’s updated advice on shielding.

29 MAY 2020

Guidance on neurological conditions

Updated version of guidance by the ABN in regard to neurological conditions and COVID-19 (replaces our post of 6 April). There is a very small section (bottom of page 10) specific to GSDs, which mentions GSDs 2, 5, 7 and 13. However, their more general comments help to give an understanding of what the impact of COVID-19 infection could be for any GSD patient with neurological involvement.

Download the PDF of version 6 of ABN guidance.

27 MAY 2020

Benefits advisor joins team

Due to a large increase in requests for help regarding state benefits during the COVID-19 pandemic, AGSD-UK has made a temporary appointment of an advisor.

Please see the full story here.

26 MAY 2020

Call for questions – webinar on COVID-19

Please submit your questions by 5pm on Friday 29 May, for the next BIMDG webinar. An expert panel will address the latest updates on COVID-19 and the next steps for patients. The webinar is to be held on Thursday 11 June. As before, a recording will be available afterwards for anybody unable to join live.
Please submit your questions via email to Metabolic Support UK.

21 MAY 2020

Government’s recovery strategy

The government has published its strategy for exiting the lock-down, avoiding a second peak of COVID-19 infections and recovery of the economy. The strategy document is available to the public. This may be of particular interest to those who are needing to shield due to a GSD, or for any other reason. Be warned it is an 80 page document, but there is a comprehensive contents list to help you find what you want. 

The report is available in HTML and PDF formats.

12 MAY 2020

Rare disease COVID-19 survey

A new Rare Barometer survey on rare disease patients’ experience of COVID-19 is now available online from EURORDIS. Please take the survey in just 15 minutes and help strengthen the Rare Disease voice. Closes on 17 May.
Read our news story for details.

6 MAY 2020

Are you needing to self-isolate?

Whilst AGSD-UK can provide information and support nationally, it is impossible for us to provide practical support locally across the UK. But if you are needing to self-isolate, NHS Volunteer Responders are now there to help locally, with shopping, collecting prescriptions or just for a chat. They are contactable by phone or through their web site.

Click on the leaflet for a full size view. 

1 MAY 2020

McArdle disease update

A circular letter has been sent by the NHS, headed UCLH but signed as from the National Hospital for Neurology and Neurosurgery Consultant Team, dated 24 April. It appears this has been sent to a wide list of patients attending clinics at the hospital, including people with the McArdle’s. It advises recipients to undertake shielding for at least 12 weeks from 24 April. We have confirmed that in fact the more specific letter from Prof. Quinlivan at the McArdle clinic dated 2 April (see below) is the one to follow. There is NOT a general requirement for all people with McArdle’s to shield. Patients may need to shield for other medical reasons, as set out in both letters, or may feel they should do so if they feel at risk of an episode of rhabdomyolysis during this period. If uncertain what to do patients of the clinic may contact them for advice – details on the letter of 2 April.

24 APRIL 2020

Updated advice from Adult LSD centres re Pompe

Updated guidance, prepared on 17 April by the Adult LSD clinical centres, on home care and clinical support for those affected by lysosomal storage disorders. This specifically updates the information around infusions and replaces the guidance from the centres given here on 25 March, see below. Please note that the advice for children remains as previously given.

Download PDF of the Adult LSD centres advice.

8 APRIL 2020

Liver disease updates

News of how the COVID-19 pandemic is affecting the Children’s Liver Disease Foundation and their research funding. Plus a link to their coronavirus news update web page, which includes details of the launch of a series of “Coffee & Catch Up” sessions for Children and Families.

PDF of the CLDF April newsletter.

8 APRIL 2020

Tips from Independent Living

There are some useful links to COVID-19 related information in this month’s newsletter from Independent Living. One is on nutrition, one on managing self-isolation and there is a warning about fake COVID-19 medications.

Open the Independent Living April newsletter.

6 APRIL 2020 (Replaced – see our post of 29 May)

Guidance on neurological conditions

We have just become aware of guidance issued on 22 March by the ABN in regard to neurological conditions and COVID-19. There is a very small section (bottom of page 8) specific to GSDs, which mentions GSDs 2, 5, 7 and 13. However, their more general comments help to give an understanding of what the impact of COVID-19 infection could be for any GSD patient with neurological involvement.

Download the PDF of the ABN guidance.

2 APRIL 2020

Guidance from UK McArdle Clinic

The McArdle Clinic (the UK’s Highly Specialised Service for McArdle Disease and Related Disorders) has written today to those attending the clinic to provide guidance regarding COVID-19 coronavirus. This provides very useful guidance and links. It offers further assistance, mainly by email, should it be needed. It is important to note that this service can be available ONLY to those approx. 250 patients known to the clinic, and not to others in the UK or abroad. However, others may never-the-less download this PDF for information.

Download the PDF of the Clinic’s letter to their patients.

31 MARCH 2020

Q&A on COVID-19 and Pompe

The AMDA (Acid Maltase Deficiency Association), the US national support group for Pompe disease, has made available a detailed Question & Answer report prepared with Dr. Priya Kishnani of Duke University.

Download the PDF of the Q&A report.

Visit the AMDA web site.

31 MARCH 2020

McArdle walking course in doubt

The “Walking with McArdle’s” course in Wales (6-13 August) and the Children & Parents event (13-17 August) are very unlikely to happen. We are liaising with the accommodation to keep options open and might be able to run something if the coronavirus is under control by then. It will be a late decision. If you are keen to attend, please email Andrew Wakelin on type5@agsd.org.uk and he will liaise close to the time.

30 MARCH 2020

Statement from the Acting Chair

Nick Jones, Acting Chair of AGSD-UK’s Trustee Board has written to all members regarding the COVID-19 situation.

Download the Chair’s statement.

30 MARCH 2020

Register 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.

The 1st BIMDG Webinar was on 23 March 2020. You can download the slides as a PDF – 55 slides, 6mb file, or watch it on YouTube (1 hr 13 min). There is a lot of general information, and GSDs 2 and 3 are mentioned more specifically.

The 2nd BIMDG Webinar was on 11 June 2020. You can watch the video recording of the webinar (1 hr 27 min), or download the slides as a PDF – 65 slides, 3mb file.