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Medical Advisory Board

We are in constant contact with a group of leading NF doctors who share a professional interest and knowledge of NF, the group name for Neurofibromatosis Type 1 (NF1), NF2-related-Schwannomatosis (NF2) and Schwannomatosis (SWN). 

They collectively and individually advise the charity and act as a resource for the Specialist Support Network and other less experienced doctors.

They advise the charity about medical research, ensure our information is accurate and up to date, and support some of our national events. We are grateful for their advice and support. They are our eyes and ears and can alert us to new developments within the international medical community working with nerve tumours.
 

Prof Gareth Evans

National Lead NF2-Schwannomatosis; Chair, Medical Advisory Board, Nerve Tumours UK

Professor Evans has established an international reputation in clinical and research aspects of cancer genetics, particularly in NF and breast cancer. He has developed a clinical service for cancer genetics in the North West Region of England, which is nationally regarded. He is an important opinion leader nationally through membership of committees and was chairman of the NICE Familial Breast Cancer Guideline Development Group and is now the clinical lead. Prof Evans has raised millions of pounds in NHS provisions and research grants, and successfully started the National NF2 service that began in 2010.

Prof Rosalie Ferner

Professor at Guy’s and St. Thomas’ NHS Foundation Trust / IOPPN King’s College London. She was the 2016 recipient of the European Theodor Schwann Award for contribution to Neurofibromatosis.

Dr Sue Huson

Now retired, Dr Huson was one of the leading names in NF nationally, and a Consultant Clinical Geneticist, based at St Mary’s Hospital in Manchester. She specialised completely in the diagnosis and management of the different forms of NF. She was the clinical lead for the North of England nationally commissioned Complex NF1 service and worked alongside Professor Gareth Evans who leads the Northern NF2 service. 

Prof Meena Upadhyaya OBE

Now retired, Professor Meena Upadhyaya OBE obtained her PhD from Cardiff University and completed a fellowship with the Royal College of Pathologists (RCPath). She is Emirita Professor in Medical Genetics at Cardiff University, Wales.

Her research career focused on many genetic disorders, especially Neurofibromatosis Type I (NF1) and facioscapulohumeral muscular dystrophy. She has published 200 papers and has edited 3 books on NF1. She was awarded the European Theodor Schwann award for her outstanding contributions to NF1 research in 2013, OBE in 2016 and Saint David Award in 2017.

She is a Fellow and Council member for the Learned Society of Wales and the Royal College of Pathologists.

Meena is an avid advocate for promoting equality, diversity, community cohesion, and integration. She is the founder and Chair of the Ethnic Minority Welsh Women Achievement Association (EMWWAA) and the Ethnic Minority Women in Welsh Healthcare (EMWWH).

Prof Jeremy Fairbank

Now retired, Jeremy graduated from Cambridge University and St Thomas's Hospital Medical School in London. He was trained in a Spine Fellowship at Oswestry, where he wrote his MD thesis on the facet joint. Jeremy is Professor of Spinal Surgery at the Nuffield Department of Orthopaedics, Rheumatology, and Musculoskeletal Sciences.

Prof Oliver Hanemann

In 2005 Prof Hanemann became chair of clinical neurobiology at the Peninsula Medical School, establishing clinical neurobiology research and administering different independent researcher groups. Nationally, I am neurology lead in the Peninsula Neurooncology network, and member of scientific advisory boards alongside Nerve Tumours UK (e.g. CTF, Lord Dowding Fund, Brain Research Trust), and member of the council of the British Neuro-Oncology Society (BNOS). 

Mr Ian Simmons

Ian runs paediatric, adult ocular motility and general ophthalmology clinics, and is the director of the regional post-graduate education programme for ophthalmology. He is also the clinical director for eye services in Leeds. Ian received his CCST in July 1999 and began work as a consultant at Clayton Hospital in Wakefield in December 1999. He has co-written two major textbooks which were published in 2001. One is on cataract surgery and the other concerns anterior segment reconstruction including a substantial medico-legal section. His NHS timetable incorporates operating lists where performs paediatric surgery and adult strabismus operations. 
 

Mr Nick Thomas

Mr Thomas is a Consultant Neurosurgeon, for King’s College London. He qualified from the London Hospital in 1988. He has a specialist interest in complex spinal surgery, endoscopic pituitary surgery, NF and skull base surgery. Prior to his appointment at King’s, Mr Thomas worked at a variety of London Hospitals, including Atkinson Morley’s Hospital, Queen Square and Great Ormond Street Hospitals.
 

Dr Alastair Santhouse

Dr Alastair Santhouse is a Consultant Psychiatrist in Psychological Medicine, at The South London & Maudsley. His special interest is in general hospital psychiatry, and he has worked in the Guy’s Hospital NF service for 10 years, in the multidisciplinary clinic.
 

Dr Zahabiyah Bassi

Zaby Bassi is a Consultant Paediatrician in Neurodisability, and a well-known voice in NF. She specialises in Children’s and Adolescent services at Alder Hey Children’s NHS Foundation Trust in Liverpool. It is thanks to Zaby, and her consistent support of the charity, that we were able to place Samantha Gaden, one of our Specialist NF Nurses, in Alder Hey Hospital. 
 

Dr Shruti Garg

Shruti did her general medical training at Grant Medical College in Mumbai, India, before training in general psychiatry at Oxford & Leeds. She has since been awarded a research training fellowship by NIHR Biomedical Research centre to study the behaviour in Neurofibromatosis Type 1. Shruti’s PhD thesis described for the first time, a high prevalence of Autism Spectrum Disorders (ASD) in NF1. This work has formed the basis for her research programme in NF1 autism. In August 2018, she was awarded the Francis Collins Scholarship in NF1 by NTAP. This work will allow her to investigate the use of non-invasive brain stimulation for working memory deficits in NF1.
 

Mr Thomas Carroll

Thomas is a Consultant Neurosurgeon with a skull base oncology interest and Clinical Director of Neuroscience at Sheffield Teaching Hospitals NHS Foundation Trust. Thomas also has some experience in neuro/learning disability, including having been Chair of Board of Governors of one of Sheffield’s special schools.  He was a co-founder and previous chair of the UK cancer genetic rare disease charity Fanconi Hope.

Professor Andrew Hayes

Professor Hayes has both a private and an NHS practice at The Royal Marsden. He is a Consultant General Surgeon and Surgical Oncologist on the Sarcoma Unit and the Skin Unit. Professor Hayes has a specialist practice in soft-tissue sarcoma and advanced melanoma, and operates on over 150 cases of sarcoma and another 150 of cases of advanced malignant melanoma a year. Professor Hayes was awarded a Hunterian Professorship in 2002 for his research into angiogenesis as a therapeutic approach for cancer and he has published widely in the fields of sarcoma and melanoma.
 

Prof Andrew King

Professor Andrew King has been a Consultant Neurosurgeon in Manchester since 1998. His private practice is based exclusively out of the Alexandra Hospital and his NHS base is The Greater Manchester Neurosciences Centre at Salford Royal Hospital where he is Clinical Director of Surgical Neurosciences. His research, for which he was awarded an Honorary Chair at The University of Manchester in 2012, is largely in skull base and neurovascular pathology. Professor King is past President of the British Skull Base Society. He works closely with colleagues both in neurosurgery and neuro-otology and offers a full range of treatment modalities for all skull base conditions including microvascular decompression, as well as less invasive treatments for trigeminal neuralgia.
 

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