This page offers guidance on a variety of NF related issues.
- Video Calling with Visible Differences
- FaceIT@home - an online support tool for adults with a visible difference
- YP Face IT - for young people with conditions or injuries affecting their appearance
- Teacher Training
- Classroom Resources
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
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 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 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 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 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.
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