Helpline 07939 046 030
Freephone 0300 102 17 22*

Statement by Mary Thomas Clinical Neurofibromatosis Nurse UK

19 May 2020

It has been a very strange time! Catherine and Bridie (our paediatric NF nurses) were redeployed to support one of the paediatric wards at the Evelina Children’s Hospital. I was redeployed to the NHS Nightingale to work with COVID patients needing critical care support

 

 

Catherine and Bridie

Paediatric NF Nurses

Mary

Clinical Nurse NF Specialist

Supporting people with Neurofibromatosis during COVID-19 has meant needing to be flexible and adapting to provide a consistent National Complex NF service through telephone and virtual clinics. Although being redeployed at the NHS Nightingale was a very positive and growing experience I am very happy to be back in the NF Centre! 

Filter News

Search by keyword
Filter by Date
Category
Reset

Nerve Tumours UK at Her Majesty The Queen’s Buckingham Palace Garden Party

Nerve Tumours UK attended one of Her Majesty The Queen's Summer Garden Parties. Find out more here:

Read More

Dan’s Story

Dan wants everyone to know that NF1 comes in different forms. Have a read of his courageous story here:

Read More

Beth’s Dog Show

Have a read about Beth's succesful dog show in aid of Nerve Tumours UK

Read More

#MyVisibleDifference Changing Faces

#MyVisibleDifference Changing Faces - Nerve Tumours UK attended the of My Visible Difference Report by Changing Faces

Read More

Emily Owen My Name is NF2

Have a read of Emily Owen's article "My Name is NF2"

Read More

Shine a Light 2019 Success!

Check out some of the stunning photos from our extremely successful Shine a Light On Neurofibromatosis 2019 campaign

Read More

Nerve Tumours UK attends Royal College of Nursing Congress

Find out more about the RCN Congress and Nerve Tumours UK participation here:

Read More

Ava’s amazing work on World NF Awareness Day

15 year old Ava managed to generate awareness across the World as part of WNFAD read more about it here:

Read More

Face Equality International Week

Find out more about the crucial campaign Face Equality International Week

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 Nerve Tumours UK cannot accept liability for any errors or omissions, or for information becoming out-of-date.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.

Website by Optima.

0 seconds of 1 hour, 6 minutes, 7 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:06:07
1:06:07
 

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

0 seconds of 57 minutes, 6 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
57:06
57:06
 

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

0 seconds of 58 minutes, 51 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:51
58:51
 

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

0 seconds of 58 minutes, 14 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:14
58:14
 

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

0 seconds of 57 minutes, 40 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
57:40
57:40
 

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

0 seconds of 58 minutes, 9 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:09
58:09
 

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

0 seconds of 1 hour, 2 minutes, 16 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:02:16
1:02:16
 

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

0 seconds of 51 minutes, 45 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
51:45
51:45
 

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

0 seconds of 8 minutes, 56 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
08:56
08:56
 

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.

0 seconds of 10 minutes, 4 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
10:04
10:04
 

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.

0 seconds of 8 minutes, 6 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
08:06
08:06
 

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.

0 seconds of 58 minutes, 11 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:11
58:11
 

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

0 seconds of 1 hour, 3 minutes, 36 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:03:36
1:03:36
 

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

0 seconds of 1 hour, 2 minutes, 3 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:02:03
1:02:03
 

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

0 seconds of 1 hour, 21 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:00:21
1:00:21
 

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

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

0 seconds of 1 hour, 8 minutes, 58 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:08:58
1:08:58
 

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

0 seconds of 1 hour, 28 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
1:00:28
1:00:28
 

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. 

0 seconds of 58 minutes, 14 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
58:14
58:14
 

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

0 seconds of 55 minutes, 14 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
55:14
55:14
 

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

0 seconds of 25 minutes, 49 secondsVolume 90%
Press shift question mark to access a list of keyboard shortcuts
00:00
25:49
25:49
 

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