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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 information as the outbreak has now started to impact our community.

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)

For governmental guidance on social distancing and shielding for everyone in the UK and the protection of older people and vulnerable adults click the button below. 

Those in the high-risk groups will have received or will receive a letter from the NHS if they need to stay at home and shield.

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

You will find further Information for shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19 here

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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Be as creative as Faye – Follow her social distance fundraising example!

Be inspired by Faye & take on your own creative fundraising idea this lockdown!

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Become an NF Patient Representative

Help fight to cure all types of NF by taking part in the latest clinical trials, find out how you can get involved.

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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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DrugStar Pearl Kelly

Find out how you can join Pearl and donate to Nerve Tumours UK simply by taking your prescribed medication

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First Specialist Neurofibromatosis (NF) Nurse for Wales

We're delighted to announce the first ever Specialist NF Nurse for Wales, find out more

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2020 A Review

2020 was hard for everyone but our NF community is stronger & more resilient than ever. Read our reflections on 2020

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Geena’s Story

James Harkness talks about his late mother Geena Andrews & what Nerve Tumours UK meant to her.

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Had your Xmas party cancelled? Find out how you can save the day & become instant #XmasPartyHeroes

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Noreen’s Story: Reflection on Lockdown

Noreen gives insight into her lockdown life over the last few months

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