Thank you for donating!

You can donate using the following services.


»Latest info for clinically extremely vulnerable adults & children


Coronavirus (COVID-19) has dominated the news since the outbreak began in Wuhan, China, at the end of December 2019. This virus has been affecting people around the world, including the UK, and has changed how we live and work dramatically. Naturally this has been a source of concern for our community and many others, including specific groups of patients who may be more at risk, including those affected by Niemann-Pick disease.

During the first and second lockdown we worked hard to develop the means in which to provide key information to our community, through the use of this page and our social media, as well as content which kept up the channels of communication as well as our spirits (through the Social Not Distant campaign). Unfortunately UK Prime Minister Boris Johnson announced a third national lockdown across the UK on the 4th January, after another rapid rise in coronavirus cases. These new measures came into effect on Tuesday 5th January and will last for at least the next two months – at this time and beyond we remain dedicated to providing care and support to patients, families, and the wider NPUK Community. Please contact us by phone on: 0191 415 06 93 or by email at: if you require further explanation regarding any of the information below, or you have any other issues we may be able to help with. We are here for you!

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 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.

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:

Feel free to download and print this poster (click here) which may assist individuals and families who are currently social distancing/self-isolating/shielding.

Responsible tourism during COVID-19:

You should not travel if you:

  • Are experiencing any coronavirus symptoms or have in the last 7 days
  • Are self-isolating as a result of coronavirus symptoms
  • Are sharing a household or support bubble with somebody who has experienced coronavirus symptoms in the last 14 days
  • Have been advised by the NHS test and trace service that you must self-isolate

Love Holidays have provided the following helpful guide which may give a bit more background to travel and making potential plans for 2021, you can read it here.