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COVID Guidance

Government guidance on coronavirus: 

You can find the latest recommendations regarding the new national restrictions on the UK Govermment’s website, here. If you are feeling concerned about coronavirus for yourself and / or your family, you may be struggling to know where to find accurate information or what action to take.  The following link contains NHS advice on coronavirus and information on the procedure for self-isolation, you can find it here. After the second lockdown ends the UK Government have announced there will be a return to the regional/area specific tier system of restrictions, which are as follows (you can click the images for further information on each respective tier level):

If you think you or a member of your household may have coronavirus, you should contact your doctor by phone or use the NHS 111 service (online or 111 by phone). Please also contact your metabolic team, who will also be able to provide advice.

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.

Tailored information for families in Wales, Northern Ireland and Scotland can also be found at:

Public Heath Wales:

Public Health Agency Northern Ireland:

Health Protection Scotland:

In the Republic of Ireland the HSE contact details are Callsave 1850 241850 Phone: 041 6850300 or @HSELive or see the following site. We will provide updated advice / information on our website ( and by social media as and when it is released.

COVID-19 webinar:

The following webinar focuses on how those affected by inherited metabolic diseases may be impacted by the recent coronavirus (COVID-19) outbreak: The webinar was organised by patient organisations working in the field of Inherited Metabolic Diseases (IMD), and was open to patients and families affected by IMD in a bid to address questions raised by the outbreak of novel coronavirus (COVID-19). We are pleased now to share the recording of the webinar, for those who were unable to attend:

COVID-19 Terms Explained: 

Struggling with all of these new terms? We developed the below graphics in-house in a bid to ease the confusion – they are also available to download at the links below the images:


PPE Explained for Children and Young People:

Attending hospital appointments might seem a little more scary right now as staff must wear PPE in order to protect themselves and others from the coronavirus. The following video is designed for children to view and gives a brief and simple explanation of Personal Protective Equipment and why it is so important right now, whilst also ensuring children/young persons understand that although nurses and doctors are wearing PPE it is still their number one priority to look after their patients.

Latest news


Calling all NPC Patients & Families: your help is needed!

Jackson Pountney, a PhD student at Aston University in Birmingham, needs your help. Jackson is undertaking a research project that will help us to better understand the impact of NPC on quality of life. This important work will help to advance understanding of NPC and support access to treatments in the UK and beyond...

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