Helpline 07939 046 030
Freephone 0300 102 17 22*

Support Resources

This page offers guidance on a variety of NF related issues.

Family Planning

Visible Difference Support

Accessibility Software

Insurance

Kidz to Adultz Magazine

Family Planning

In vitro fertilisation (IVF) is one of several techniques available to help people with fertility problems have a baby.

Preimplantation Genetic Diagnosis (PGD) is a type of IVF which aims to avoid passing on a genetic condition. Embryos are created outside of the body and tested; embryos not affected are then placed back into the womb, in the hope a pregnancy occurs. If you would like to discuss this topic further, in the first instance please contact your GP and ask for a referral to your local Clinical Genetics Unit or a local genetic counsellor.

You can find further information on PGD at Guy’s and St Thomas website.

The Birmingham Women’s and Children’s Hospital also have a really informative leaflet.

We advise seeing a local genetic counsellor to discuss this in the first instance. 

Elena, who has NF1, and her husband Nick share their story about using PGD:    https://nervetumours.org.uk/news/planning-for-a-family-elena-nicks-story

 

Visible Difference Support

Video Calling with Visible Differences

Here are some thoughts on how to manage worries and concerns when video-calling. It may be helpful for you, if you are:

  • somebody with a mark, scar or condition affecting your appearance (visible difference)
  • the parent/guardian, teacher, youth worker or employer of somebody with a visible difference

What are the challenges?

The COVID-19 pandemic prompted a big surge in the use of video-calling software such as Zoom, Teams, FaceTime, Houseparty and Skype. Many people had to adjust suddenly to relying on these for work, as well as to socialise remotely with friends and family. 

This can be a great way to stay connected, but there are many reasons people may find video-calling challenging – especially if you have a visible difference. If you do, you’re not alone. From what we hear from our community, this can raise particular challenges or anxieties for those with a visible difference.

FaceIT@home - an online support tool for adults with a visible difference

FaceIT@home is a self-guided, online tool for adults (18 years or over) in the UK. It contains eight user-friendly sessions designed to help you learn new skills, as well as providing useful tips to feel more confident about the way you look. It is available anytime from the comfort of your own home.

All you need is a computer or tablet and access to the internet to do the 8 sessions that help you with worries and problems you might be experiencing having a visible difference.

For further details on how to access the tool either, self-referral or professional referral, visit the following link and contact Changing Faces via the number listed or by filling in the contact form. 

YP Face IT - for young people with conditions or injuries affecting their appearance

YP Face IT is an interactive web-based self-help tool for young people aged 12-17.

It has been designed to help young people manage the psychosocial challenges associated with having a condition or injury that affects appearance, and is now freely available for young people to use at home with supervision from a parent/guardian.

YP Face IT has seven weekly sessions that provide advice and support in written, audio and video formats. YP Face IT was designed in collaboration with young people, parents, psychologists, and researchers from the Centre for Appearance Research (CAR) at the University of the West of England.

Teacher Training

Teacher Training and CPD materials for training providers

These resources are designed to help providers deliver training to new and experienced teachers on how to better approach and teach about difference.

Teachers have a key role to play in supporting young people with a visible difference. Good teaching practice creates an inclusive environment for students who look different and helps all students to understand and appreciate difference.

Good training equips teachers to do both of these things. Our materials are here to help you, as a teacher training provider, support trainees to better understand strategies for working with students who have a visible difference, as well as the challenges they may face.

Classroom Resources

Classroom and assembly resources to help teachers & youth workers to deliver lessons about visible difference.

Information, discussion and activities can help your pupils explore the ways in which people are different and how to accept these differences.

Our resources are for all schools, whether your institution has pupils with a visible difference or not. By exploring visible difference, we can help to change the negative stereotypes often associated with looking different. By creating inclusive schools, we can create an inclusive society which welcomes and includes everyone and values difference.

Helperbird offers a range of tools to customize the web to improve accessibility, reading and writing. 

Described as a game-changer, whether you are at school, college or at work, this easy to use app would be of benefit to those with dyslexia, ADD, low vision and learning difficulties as it allows you to personalise web pages, PDFs and documents to suit your requirements and your own writing style.

It includes features such as Reading Mode, Immersive Reader, dyslexia support, text-to-speech with natural voices, word prediction, voice typing and more. 

The Genetic Alliance have produced this useful document containing advice on getting insurance when you have a genetic condition.

Download ‘Insurance & Genetic Conditions’

Kidz to Adultz Magazine is designed with young people, parents, carers and professionals in mind.

Every edition is packed with interesting articles, true stories, relevant promotions, advice and more. It's a great way to stay engaged with the Kidz to Adultz community and keep up to date with the latest conversations around children and young people living with disabilities.

View all previous editions and sign up

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