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.

Third vaccine dose booster - the NHS will contact you directly

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 9am to 5pm on 07939 046030. 

On the other days of the week, the head office team can be contacted from 9am to 5pm 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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Ella’s editorial

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

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A man on a mission: Onno Faber and his NF2 journey

Onno Faber - since NF2 diagnosis aged 33, Onno is a man on a mission. Article courtesy of NEO.LIFE

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Kate’s Story NF1

Kate describes her son's NF1 journey and how NTUK supported them

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World Mental Health Day

Your mental health is as important as your physical health

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Strictly Come Running: London Marathon Class of 2021

Congratulations to our class of 2021 London Marathon runners

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Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the 2021 NHS England NF2 meeting

Read more about the England NF2 meeting - working together to improve the experience of NF2 patients

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Eden Study

Investigating early social, communication and attention development in babies who have NF1/ or a parent has NF1

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Douglas Thomson’s NF1 Story

Douglas describes life with NF1 and how losing his leg was one of the best things to happen to him

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Tricia’s Wingwalk and Birthday Fundraiser for Sarah and Keith

Tricia's fundraising wingwalk in memory of her daughter Sarah who had NF1, and to remember her father Keith

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