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Postponed: Medicine and Me: Living with Nerve Tumours at the Royal Society of Medicine

13 March 2020

We would like to update you regarding the Medicine and Me: Living with nerve tumours event that was due to take place at the Royal Society of Medicine on Thursday 23 April 2020. Unfortunately due to the current Coronavirus (COVID19) situation and the lockdown restrictions in place, The Royal Soceity of Medicine has decided to cancel any in person events taking place in July 2020.

As such the Medicine and Me: Living with nerve tumours meeting due to take place on Monday 13 July 2020 has now been postponed. Currently there is not a new date set, however this will most likely be in early 2021. The Royal Society of Medicine will be in contact with ticket holders directly in due course and tickets will be valid for the to be agreed later date. We will keep you posted on any further developments.

 

Medicine and Me: Living with Nerve Tumours

Postponed until further notice 
The Royal Society of Medicine
1 Wimpole Street, London

Nerve Tumours UK and The Royal Society of Medicine invite you to attend a half day conference highlighting and discussing Neurofibromatosis.

The country's leading experts in Neurofibromatosis Type 1 and Type 2 will review and discuss current approaches to diagnosis and treatment, in the light of advances in molecular biology and imaging. There will be patient presentations and a panel discussion.

By attending this meeting, you will have the opportunity to:

  • Understand the epidemiology, biology and genetics of Nerve Tumours - Neurofibromatosis I (NF1) and Neurofibromatosis 2 (NF2)
  • Appreciate the impact of living with NF1 and NF2 first-hand from patients 
  • Learn about the recognition of malignant transformation (NF1)
  • Discover the management of NF2 nerve tumours
  • Explore today’s treatments
  • Understand the management and support for people with Neurofibromatosis

 About Medicine and Me

Medicine and Me meetings aim to provide an outline of current best practice and future updates of important conditions and to give direct voice to patients and their carers and enable them to discuss their concerns and reflections on the impact of diagnosis, investigation and management.

Physicians and surgeons and indeed all healthcare professionals continue to learn from and be inspired to greater efforts to improve care by hearing directly from patients.

The Programme and tickets, free of charge for patients, carers, relatives, students and trainees are available on the link below: 

Book Here

BSL Translators will be in attendance, and for any further special access or specific needs, please email us at info@nervetumours.org.uk by 31 March 2020

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Sunflower lanyards to support patients and visitors with hidden disabilities

Read about the new lanyards being given out at Heathrow, Sainsbury's and Gatwick to help support those with disabilities

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NTUK attends Small Charity Week

Nerve Tumours UK attended Small Charity Week, find out more about the week and why we attended here:

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Nerve Tumours UK Specialist Neurofibromatosis Nurses attend the National NF2 CQuinn Meeting in Manchester.

Have a read about what was talked about at this year's National NF2 CQuinn Meeting in Manchester

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Nerve Tumours UK adds BrowseAloud to their website

Have a read about the new software we have uploaded to our website in order to make it more accessible to everyone.

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11 year old inspired to run 31 miles within 8 hours for his brother who has NF

Have a read about young Will's remarkable achievement that has been inspired by Adam Jacob's story on our website

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Simon’s Story

Have a read of Simon's Story and his desire to help NF2 Bio Solutions find a cure for NF2:

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Steve Brine MP helps spread awareness for Nerve Tumours UK

The Burbridge Family recently met up with MP Steve Brine to help spread awareness for NF. Find out more here:

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Meet Tom

Tom Hazell is 37, works in IT, lives in Essex with his long-term partner, he has NF2/Schwannomatosis Find out more here:

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A Gamble Across Britain

James will be cycling the length of the country this September- that's 980 miles! Find out more here:

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What is Neurofibromatosis Type 1?

About 25,000 people in the UK have NF1, a genetic condition that causes nerve tumours to grow where they shouldn't.

Find out more

What is NF2 related Schwannomatosis (NF2)?

NF2 is a rare genetic disorder that is present at birth, though signs do not usually appear until the teens or twenties.

Find out more

The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing

Find out more about the debate recently undertaken at The Royal Society here:

Find out 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.

Masterclasses in NF1: 1.Management Of Plexiform Neurofibromatosis in NF1- Rianne Oosterbrink, Justus L Groen, Karine Lascelles

Masterclasses in NF1: 1.Management Of Plexiform Neurofibromatosis in NF1

Rianne Oosterbrink MD

Justus L Groen MD

Karine Lascelles MD

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