Helpline 07939 046 030
Freephone 0300 102 17 22*

Specialist NF Nurses

We are incredibly proud of our unique network of Specialist NF Nurses & Advisors, who are based within NHS Trusts around the UK. 

All of our Specialist Nurses & Advisors are highly qualified professionals with a background in either nursing, social work or occupational therapy. With more funding, the network will continue to grow and develop, both in terms of size and knowledge of NF, the group name for Neurofibromatosis Type 1 (NF1), NF2-related-Schwannomatosis (NF2) and Schwannomatosis (SWN) . 

The importance and value of the network is demonstrated every single day in the unique work of the team with individuals, families, medics, schools, other voluntary organisations and a wide range of other associated professionals.

Specialist NF Nurses & Advisors

To see if there is a Support Specialist in your area, please see the map below or call 07939 046 030 (Mon/Wed/Fri 9am-5pm), for more information & support. 

Carolyn Smyth

Carolyn qualified as a Registered General Nurse in 1986 and is based at the Birmingham Women’s and Children’s Hospital NHS Foundation Trust and is the UK Lead Specialist Neurofibromatosis Nurse.

Carolyn has a wide variety of experience including high dependency, community and research nursing.

Carolyn has worked in genetics since 1994 on a project with Birmingham University and Diabetes UK trying to identify genes for Type 1 Diabetes.

Carolyn started working for the charity in 2000 and has a particular interest in learning difficulties associated with NF1. 

Carolyn covers the following regions: Birmingham, West Midlands, Staffordshire, Shropshire. 

Charmaine Forrester

Charm qualified as a Registered Adult Nurse in 2013. She is our newest member of the team - joining the Charity as a NF1 Clinical Nurse Specialist in January 2023. Charm started her nursing journey on a respiratory ward at GSTT. She then went on to a Stroke and Neuro rehabilitation Ward within the Trust. As a student nurse, she thoroughly enjoyed her placement with the Dermatology department in the minor surgery unit.

Prior to joining the NF1 team she was a Senior Staff Nurse on the Older Persons Assessment Unit at GSTT. It was at this ward where her previous experience allowed her to amalgamate caring for patients clinically and pastorally. Charm has a passion for equality and diversity with positive well-being and patient education being at the forefront of her practice, promoting awareness and guidance to successfully manage long term conditions.

Charm is based at Guys and St Thomas’ (GSTT) in London, looking after patients in Greater London & within the M25.

Rebecca Rennison

Rebecca joined the charity in 2018. She works at the Genetics Institute at the Centre for Life in Newcastle. 

She qualified as an RGN in 1993 at Northumbria University and went on to work in anaesthetics and recovery at the Freeman and Royal Victoria Infirmary in Newcastle upon Tyne.

During this period she also completed paediatric nursing. Rebecca has always had an interest in public health and social care and went on to work in addictions services. She has worked within young peoples and adult services in County Durham and Northumberland. 

She also works on Monday and Friday for the charity's helpline and is the Lead Nurse, Nerve Tumours UK.

Rebecca covers the following regions: North East, Northumberland, Teesside and Cumbria.

Tracey Kenyon, NF Nurse,

Tracey Kenyon

Tracey initially trained as an adult and paediatric nurse and Health Visitor. After acquiring a range of experience in paediatric nursing she moved into Health Visiting before moving into child development and disability services, initially as a Specialist Health Visitor and latterly as a Nurse Consultant.

Since then, Tracey has been involved in teaching and working for the DWP, but COVID and working from home, made her realise she wanted to return to working with people, the NF community and is now based at Wessex Clinical Genetics Service - Southampton.

Tracey covers the following regions: Hampshire, Dorset, some of West Sussex, Wiltshire and Isle of Wight.

Samantha Gaden

Sam qualified as a learning disability nurse in 2001, she has been community-based since then, working with children and adults in many different specialities.

Sam also has substantial experience working as an LD nurse within CAMHS.

Furthermore, Sam will be working with adults and children with NF1 and NF2.

In addition to being an NF nurse, she is also an ASD Specialist practitioner at Alder Hey Hospital – assessing autism in children and young people. 

Sam covers the following regions: Merseyside - up to Cumbria and down to Wales.

Helen Tomkins

Helen having previously qualified as an Occupational Therapist completed her post-graduate training in Family Therapy and Cognitive Behavioural Therapy.

Helen always looks to provide holistic care for her patients.

She is based at the Derriford Hospital in Plymouth and supports those diagnosed with both NF1 and NF2.

Helen covers the following regions: Devon and Cornwall.

Clare Dhillon

I am a paediatric nurse having gained experience working on a medical ward at Sheffield Children's Hospital. I then trained to become a health visitor, working in the community and developing links within the local area. From there I decided to become a nurse Specialist, working as an ADHD nurse, supporting patients, reviewing their needs both at home and at school.

I now work as a Specialist NF Nurse at Ryegate Children's Centre and support patients and their families.

Clare covers the following regions: Sheffield - South Yorkshire.

Sarah Cockcroft

My name is Sarah, and I am a Clinical Nurse Specialist (CNS) for people with NF1. I am based in Leeds supporting families across Yorkshire and Humberside.

I qualified as a children's nurse in 2011. My nursing background includes five years in respiratory nursing; a year of this as a CNS in home ventilation. I then moved into children’s palliative care for six years; I worked as a Practice Educator and then as a CNS in hospice settings.

I am very passionate about caring for patients holistically and working with the wider family. I have experience caring for children and young adults with long term conditions and supporting families through uncertain times.

Over the years I have learnt so much from patients and families and feel very privileged to have met such courageous and inspiring individuals.

In my CNS NF1 role, I will share my experiences and look forward to continually learning from patients, their families and the wider team.

Helen Swann

I qualified as a general nurse in 1985 & moved into midwifery, working there for 16 years before becoming a health visitor in 2006.

Throughout my clinical experience, I have nursed, supported & educated families and children with a diverse range of illnesses and conditions in hospital and the community, seeking to initiate change and improve health. I completed an MSc at Cardiff University which involved an in-depth study of children’s developmental assessments.

I have now joined the team as the first-ever Specialist NF Nurse for Wales, based at the University Hospital in Cardiff.

Helen covers the following regions: Wales.

Siobhan Harding-Lester

Siobhan Harding-Lester accepted the role of lead Genetic Counsellor for NF in 2021, and we invited her to join as an associate to our Specialist NF Support Network.

She is based at Belfast City Hospital and works with the Clinical Genetics Consultant and NF Lead, Dr Deirdre Donnelly, supporting a wide variety of patients from across Northern Ireland.

She completed her MSc in Genetic Counselling in 1999 at Manchester University. She then worked as a Genetic Counsellor in California before returning to the UK in 2004.

Jessica York

Jessica joined  the team at the beginning of March 2024. She is based in Plymouth, working alongside Helen Tomkins and other healthcare professionals, supporting families across Devon and Cornwall.

Jessica registered as an Adult Registered Nurse in 2018 and has worked in the care industry since 2012, recently transferring from a junior sister role on an acute ward. 

Before this, she worked on a surgical ward as a newly qualified nurse. In her nursing career she specialised in a variety of areas, mainly in high dependency, surgical and oncology care.

Melanie Murrell

Melanie Murrell currently works at Birmingham Women's Hospital NHS Foundation Trust, working with adults and children who have NF1.

Melanie wanted to focus on her career and wanted a new challenge that she thought could apply all her knowledge and experience to that she has gained over 30 years. 

Melanie covers the following regions: Warwickshire, Worcestershire, Herefordshire & Coventry.

If you have any questions you can reach our Specialist Advisors through our helpline - Monday, Wednesday and Friday 9am to 5pm 

https://nervetumours.org.uk/help/line

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