Helpline 07939 046 030

Neurofibromatosis & COVID-19 (Coronavirus)

Additional information concerning Coronavirus (COVID-19) for people diagnosed with Neurofibromatosis

We’re aware that COVID-19 is causing a lot of uncertainty for many and here at Nerve Tumours UK we are fully dedicated to the health and well-being of our NF community, and as such issues, the following updates as given by the government.

People should check with their own doctors if in any doubt, and we strongly recommend that you follow all Government & national medical guidelines during this period. You can download the information here.

Neurofibromatosis & COVID-19 (Coronavirus)

How to stay safe and prevent the spread

Guidance on protecting people defined on medical grounds as extremely vulnerable

 

Covid 19 Vaccination: Contact your GP for any questions, vaccination schedule and specific processes in your area.

Hospital Contact

We understand that this is a very stressful time for many people, and it still may take longer for you to contact your local NF service. This is is because many of our doctors and nurses around the UK had been redeployed to help with Covid 19 medical care and vaccinations. Please do not worry, we are here to help.

Our Helpline is open on Monday & Wednesday from 9 am to 5 pm on 07939 046030. 

On the other days of the week, the head office team can be contacted from 9 am to 5 pm on 0208 439 1234.

Outside of these hours, and if you think it is an emergency, please contact your GP, or go to your nearest A&E Department.

Face Mask Exemption Guidelines/Cards follow Governmental Guidance for further information

 

In addition to our health, many people are struggling because they are unable to work. Some may even have lost their jobs or have reduced income.

Please do have a look at these affiliated charities for further help and information.

Carers UK

Carers UK is there with support, information and advice for carers that might be affected by the corona crisis.
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Visit Website
Gov.uk

A range of extra support and measures will be in place to help workers, benefit claimants and businesses affected by coronavirus.
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Visit Website
Scope

Scope is a national disability charity that campaigns to challenge and change negative attitudes about disability and provides direct services. They will support you and your rights in these difficult times.

Visit Website
Turn2Us

Turn2us is a national poverty charity helping people when times get tough gain access to welfare benefits, charitable grants & other financial help – online, by phone and face to face through our partner organisations.

Visit Website
Stepchange

Stepchange provides a benefit checker to see if you may be entitled to make a claim. Encouraging you to contact your bank, landlord or anyone you owe money to, asking for payment flexibility at this time.

Visit Website
Mind

Coronavirus & your mental health information resources. If you're finding things hard emotionally right now, you're not alone. We're here to provide information & support.

Visit Website

The Body & Mind Toolkit for Adults & Children

An online information booklet with links to Wellness and Sleep, Eat Well and Move Your Body More resources in the COVID-19 Wave 2 pandemic period for people who use Highly Specialised Services and their families.

This is a collation of resources, that groups and services across a number of trusts and organisations have already made available 

In these difficult times of possibly losing contact with the outside world remember there different ways to stay active and socialise. Follow us on social media for further information.

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Diana’s 1 Month of Rowing for Neurofibromatosis

Diana is taking on an epic 150k rowing challenge - 5k per day to support her daughter Ellie & our NF community

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The NTUK running team kick starts 2021’s running season in this year’s Asics 10k!

Check out the year's first major running event - see how our NTUK running team got on!

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Alex’s 12 months of Running

Alex has nearly completed his incredible 12 months of running for NTUK, totalling a whopping 80km – see how he got on!

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Ella’s editorial

Have a read of Ella's editorial as she shares her brave journey against NF1 with us!

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Colin’s West Highland Walk for NF

Colin has completed his epic journey across the highlands to raise awareness for our NF community. See how he got on.

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Kian’s NF2 Blog

Kian shares his NF2 journey and his inspirational path - training to swim in the para-olympics

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To Infinity & Beyond!

Cameron takes on an incredible quest for NF - 34 miles running, 34 miles cycling, 34 miles rowing and a 1 mile walk with Roo!

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Runderpants 2021/22 Is Back!

Take part in an event that's absolutely pants! Runderpants is a fun run, in your pants, for our NF community!

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TABI (Teen Appearance and Body Image) - CAR Research Study

Find out how you can take part in the Centre for Appearance Research's study for Young People

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