NF Support Downloads
NF Support Downloads
Here we have lots of documents that will benefit anyone looking to learn more about NF, specifically Neurofibromatosis Type 1 (NF1) or NF2-related-Schwannomatosis (NF2). Please keep scrolling down the page to find NF1 Downloads, and after that, NF2 Downloads.
NF1 Downloads
NF2 Downloads
NF1 Support Documents
What is Neurofibromatosis Type 1 (NF1)?
This is a simple, easy read guide to NF1
Polly's Best Friend
A short story for young girls to help them better understand their condition.
The Winning Goal
A short story for young boys to help them better understand their condition.
Additional Notes For Teachers: Children with NF1
This information sheet will help further aid teachers in providing the best possible support for students with NF1. This document touches upon how a students learning, concentration, memory, co-ordination, speech, reading, writing and calculating may all be affected as a result of NF1 and what a teacher can do to help.
NF1: Information for Teachers
This is a document to help support teachers who have a child with NF1 in their class. It delves into problems that could occur in school, this includes a number of hypothetical scenarios and how the teacher can act. The paper also briefly delves into the legal reasons behind what a teacher must do to help and provide support to a student with NF1 (Equality Act 2010)
Summary of Learning Difficulties that Affect some Children with NF1
Concentration, Co-ordination, Memory, Speech, Processing and Sequencing, Organisation, and Social and Behaviour Patterns are all briefly explained.
My Child has NF1. What should I tell the Teacher?
This information sheet is designed to assist and support parents in telling a school and teacher what they need to know about their child's NF1
Talking with Children about NF
This information sheet is designed to help support parents in how to tell their child about their NF. There is no right or wrong way to do it but the document offers some possible ideas about what may be done. The importance of letting a child know about their NF from a young age is also discussed.
The Child with NF1: Behaviour Difficulties
This document discusses some of the behaviour difficulties that may arise in a child with NF1. This then further explains the steps that you as a parent can take in terms of combatting this behaviour while ultimately reinforcing good behaviour.
The Child With NF1: A Guide For Parents
This document contains a lot of useful information to help parents better understand their child's NF. Within the document it explains why a child might have NF, both the health and learning complications that may arise and what check ups a child will need once diagnosed.
Information for young people with NF1
This support download is designed to assist young people with managing their NF1. It discusses what health changes may occur as you get older, who looks after your NF1 as a young adult, problems that can occur with learning, body positivity and even genetic testing and planning a family. It's a complete guide for any young adults with NF1
Developmental Co-ordination Disorder Dyspraxia
This information sheet touches upon the gross motor and fine motor movement difficulties associated with dyspraxia and the complications that may arise as a result of this disorder
NF1: A Guide For Adults and Families
This document contains a more detailed scientific explanation about NF1 designed for adults and families. It looks at the complications that arise as a result of NF1, how it is developed, NF1 and pregnancy etc. It is a document that should support any adult in any decisions and understanding regarding their NF1.
The Role of the NF Specialist Advisor
This sheet briefly explains the work and support that our NF Specialists provide, how to contact them and the area within the UK that they cover.
NF1 and employment...some useful information that an employer needs to know
This support document is designed to support employers in creating the appropriate environment for their employees with NF1. It discusses some basic information about NF1, the learning difficulties that may arise from the condition and how you as an employer can help.
Information about localised, segmental or mosaic NF1
This information sheet explains why a segmental NF1 may occur, the risks of passing it on to children and planning a pregnancy with the condition. The paper also discusses the necessary health checks that should be in place when diagnosed with segmental NF1.
Bone Changes in NF1
This information sheet describes the bone changes associated with NF1 including scoliosis, congenital pseudarthrosis and disorders of bone growth. Within this document each condition is explained in terms of what it is, how it is diagnosed, what risks and symptoms are associated with each disorder and how it is treated.
Pain Management
Within this download you will find explanations behind the causes of pain and the treatment available to reduce pain. The document also delves into the psychological aspect behind pain and how you may be better able to control it.
NF Scans
This document describes each of the different sort of scans that may be utilised on a patient with NF1 e.g. ultrasound. The information sheet explains what each scan is, what occurs when undergoing the scan and why a particular scan is used.
Research Projects and Clinical Trials: Our Role
This information sheet talks about the kind of research we support and the importance behind it. The document also describes the general basis behind both clinical trials and quality of life studies and explains who is eligible to take part in such research.
Annual Review Guidelines for NF1
The Annual Review Guidelines for NF1 (Best Practice) will give your GP further guidance and information.
Review Guidelines for Children with NF1
The Annual Review Guidelines for Children with NF1 will give your GP further guidance and information.
Learning Disability Register
If you or your child have learning difficulties, you can join a register at your doctor’s surgery. Anyone of any age, and any level of learning difficulty, can join the register. Please download this letter - you can take it to your GP and request for you (or your child) to be added.
NF2 Support Documents
What is NF2-related-Schwannomatosis (NF2)
This is a brief document summarising NF2 for diagnosed patients. The leaflet talks about the causes, affects, treatments and hearing rehabilitation surrounding NF2.
Communication and NF2
This fact sheet will help you to better understand how to communicate with someone who has NF2 by overcoming their difficulties such as hearing loss, decreased concentration levels etc. as a result of NF2
NF2 Coping with Fatigue
A simple information sheet offering some ideas on how to cope with fatigue as a result of NF2.
Employment and NF2
This information sheet discusses your rights as an employee with NF2 (The Equality Act 2010), what you should tell your employer regarding your NF and who can help find work that is suitable to you.
Hearing Link's Residential Programme for NF2
This sheet tells you about a national organisation that runs a programme that helps people with NF2 deal with their hearing loss.
The Hearing Therapist
This download discusses the role that hearing therapists can play in supporting you and how you can find your nearest hearing therapist.
NF2 and Help with Speech Difficulties
This information sheet discusses the two types of speech difficulties associated with NF2 while offering some helpful tips on how to make your speech clearer for a listener.
Information about Mosaic NF2
This document is solely based around mosaic NF2. The sheet explains what it is, what it means, why it occurs, how it is diagnosed and the significance behind it.
NF2 and employment
This document is aimed more towards the employer, than the employee and discusses what an employer should do to cater to the needs of any employee with NF2.
Pain Management
Within this download you will find explanations behind the causes of pain and the treatment available to reduce pain. The document also delves into the psychological aspect behind pain and how you may be better able to control it. (Same as in NF1 section)
Radiosurgery and other Radiation Treatments
This document explains the terms that may be encountered in researching radiation treatments for NF2. It covers both vestibular schwannomas meningiomas as the most common tumours in NF2 that are referred for treatment. It addresses commonly raised concerns about radiation treatments in the context of NF2.
Research Projects and Clinical Trials
This information sheet talks about the kind of research we support and the importance behind it. The document also describes the general basis behind both clinical trials and quality of life studies and explains who is eligible to take part in such research. (Same as in NF1 section)
NF Scans
This document describes each of the different sort of scans that may be utilised on a patient with NF1 e.g. ultrasound. The information sheet explains what each scan is, what occurs when undergoing the scan and why a particular scan is used. (Same as in NF1 section)
The Auditory Brainstem Implant
This document explains what an ABI is, the need for one, how it works, the effectiveness of getting an ABI and the importance of getting an MRI once a year with one.
The Role of the NF Specialist Advisor
This sheet briefly explains the work and support that our NF specialists provide, how to contact them and the area within the UK that they cover. (Same as in NF1 section)
Tinnitus
This information sheet explains what tinnitus is, what causes tinnitus and how to manage it.
Understanding Balance in NF2
This download initially explains some of the core concepts surrounding balance before discussing some of the balance difficulties that arise with NF2. It then explains what you can do to combat these difficulties while offering a number of balance exercises to help improve balance with some day to day tips that can be utilised to help prevent you from losing your balance
Vestibular Schwannoma
This fact sheet is intended to give a possible explanation for symptoms you might experience as a result of having vestibular Schwannomas (formerly called acoustic neuroma)
Annual Review Guidelines for NF2
The Annual Review Guidelines for NF2 (Best Practice) will give your GP further guidance and information.
Bevacizumab (Avastin) Information Sheet
Information Sheet from Cambridge University Hospital about Bevacizumab (Avastin), used to treat tumours in NF2 (NF2-related-Schwannomatosis)
NF2-related Schwannomatosis: Sudden Hearing loss Advice to GPs for management
Information sheet outlining the causes and possible treatments for hearing loss from NF2-related Schwannomatosis.
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