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Letter from our Chief Executive: Toni Mathieson

Posted: 20.03.20

Hi Everyone,

I wanted to take this opportunity to let our patients, families and supporters know how NPUK is responding to the coronavirus (COVID-19) pandemic:

Firstly, I want to reassure you that the health and safety of our community is foremost in our minds. We are committed to providing updated information and resources about coronavirus and how it may impact you and your family. You will find links to the latest information and resources on our website and we will also share these via social media and email – please ensure you are connected in the way you prefer.

Our staff team members are used to working remotely and whilst we are unable to hold face to face events or to provide in-person support for the time being, please know that we are still here to support you, to answer your questions or just to chat. You can contact team members via our helpline 0191 415 06 93 or their individual mobile numbers, by message or email at any time. We would also like to encourage you to use video calling such as Facetime, Skype or Zoom (we can help with this) – I am sure you agree that maintaining personal contact is so important during these challenging times.

NPUK has always worked collaboratively with others and during this time of crisis, when many of our challenges are shared, there has never been a greater need for us to pull together on behalf of all those we support. On Monday, we will join with other patient advocacy groups to facilitate a webinar to specifically address the questions and concerns from our shared communities in Lysosomal Storage Disorders and Inherited Metabolic Disease. You can find further information about the webinar here:

Whilst those affected by Niemann-Pick diseases are at no greater risk of contracting coronavirus then any member of the general public, we would urge you all to follow recommended precautions, and to do all you can to stay safe and well.

We are also conscious of the mental and emotional strain that the coronavirus is having on all of us. Social distancing and self-isolation are not easy – please do reach out if we can help or support you in anyway. Resources that may help you to manage can be found here:

If you are concerned about cancelled medical or clinical trial appointments, please do let us know. We are working with the Specialist Centres and the Pharmaceutical companies to ensure you have access to the latest information. We are also aware of the financial issues many families are experiencing as a result of the coronavirus crisis. If you are affected and need support, please let us know. We are working to find available funding streams, to understand changes to benefits and other options that might be open to you.

If there are other ways in which we might help, please do let us know. You are not in this alone and we can try to find solutions and address challenges together. This community never fails to inspire me – the strength and bravery I have witnessed knows no bounds. Together we have experienced many challenges and although the future may seem uncertain, we will remain strong, face it together and emerge stronger.

Toni Mathieson, NPUK Chief Executive