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One More Nurse Appeal Press Release

07 January 2019

"When our daughter was diagnosed, we were in shock. Fortunately, we were able to speak with a Support Specialist, who explained everything and has been an extraordinary support ever since."

– Melanie Gamble, Mother of child with NF1

Charity Launches #OneMoreNurse Campaign to End Health Postcode Lottery For Those With Nerve Tumours

 

Nerve Tumours UK is launching its #OneMoreNurse campaign to end the postcode lottery faced by those with nerve tumours needing access to specialist medical advice and support.

Every day in the UK, a child is born with neurofibromatoses – genetic disorders that have a major impact on the nervous system and lead to tumour formation. Some inherit the condition, others are affected by a random mutation. Nerve tumours can affect any ethnicity, class or sex, and there are currently over 26,000 people in the UK who have one of the neurofibromatoses.

"We need at least five more NF nurses - that’s an additional £125,000 a year, so let’s make a start and help thousands more people."

– Karen, Charity Director

Many health care professionals have little knowledge of nerve tumours and the manifestations of the neurofibromatoses. For example, Neurofibromatosis Type 1 (NF1) predisposes people to many complications which affect most of the body systems. Their occurrence is unpredictable, and complications include disfigurement caused by plexiform neurofibromas, brain tumours, sarcomas, breast cancer epilepsy, scoliosis, rare causes of hypertension. Children with NF1 have an IQ approximately 10 points lower than their peers and problems with working memory and coordination make schooling a real challenge. With approximately 50% of NF1 children developing ADHD and 25% ASD, early diagnosis is crucial.

Some years ago, the charity launched a scheme in partnership with the NHS to provide regional nurse support specialists, but this is not yet available throughout the UK. Nerve Tumours UK is now seeking to end this postcode lottery by raising additional funds through its #OneMoreNurse campaign.

"Our Support Specialists provide crucial medical and emotional support to patients with NF. But there are large areas of the country that don’t have access to this support – we need at least five more Support Specialists."

– Michael Fry, Chair of Nerve Tumours UK

As Melanie Gamble, whose child has NF1, says, “When our daughter was diagnosed, we were in shock. Fortunately, we were able to speak with a Support Specialist, who explained everything and has been an extraordinary support ever since.”

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One More Nurse Press Release

.DocX file - a Press Release detailing the #OneMoreNurse campaign by Nerve Tumours UK.

Media Pack

PDF file - Nerve Tumours UK's media enquiries pack.

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