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NF & COVID-19 (Coronavirus)

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

We’re aware that COVID-19 is causing a lot of uncertainty for many. Here at Nerve Tumours UK, we are fully dedicated to the health and well-being of our NF community, and will share 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.

NF & 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: guidance & resources for schools and parents 

 

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

Most Vulnerable to be offered spring Covid 19 booster

https://www.gov.uk/government/news/most-vulnerable-to-be-offered-spring-covid-19-booster​​​​​​​

If you have any questions, please contact your GP directly.

NHS Letter for GPs

Hospital Contact

We understand that this is an ongoing stressful time for many people, and it still may take longer for you to contact your local NF service. Please do not worry, we are here to help.

Our Helpline is open on Monday, Wednesday & Friday 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, and the aftermath of the last two years, 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 

The Body & Mind Toolkit for Adults & Children Download

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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Eden P for healthcare professionals

Healthcare professionals, who provide support to expectant parents with NF1 are invited to take part in the Eden P study

Read More

Nicole’s story

Nicole has NF2, she describes the preparations and the absolute joyful experience of the birth of her son Lewis

Read More

CAR Research - exploring family planning decisions

Research Advisors required to help explore what influences decisions about having children and what support would be helpful

Read More

Corporate Fundraising 2024

Find out some of the different ways your company can support Nerve Tumours UK

Read More

Matthew’s story

Matthew, who has NF2 and is a dedicated Scout, has been awarded the prestigious Cornwell Scout Badge

Read More

Ella’s editorial

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

Read More

Connected Recovery - Tackling Loneliness

A report from the All-Party Parliamentary Group (APPG) on Tackling Loneliness and Connected Communities

Read More

Christmas Message from the Nerve Tumours UK team

Thank you from all of us at Nerve Tumours UK

Read More

Specialist NF Nurses/ Advisors’ Conference 2023

Find out more about this year's meeting with our Nurses

Read More

Registered Charity Number: 1078790 and SC045051

Nerve Tumours UK has taken reasonable care to ensure that the information contained on this website and in its newsletters, literature is accurate. Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date. Any information given is not a substitute for getting appropriate medical advice from your own GP or other healthcare professional.

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Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK