Resources and Useful Information

My Child’s been diagnosed with Neurofibromatosis Type 1 (NF1) – What Now is a really useful booklet that was written by a group of parents who know and understand exactly what it feels like to have a child diagnosed with NF1  to order a copy click here

Whilst CTT is here to support those with Neurofibromatosis Type 1, we are not here to give individual medical advice please see your Health Care  Professional

Join our friendly facebook group –  CTT Support and Information a closed group where you can ask any questions or ask for advice from other parents.

Red Book Insert

CTT have produced a Red Book insert on NF1 this will help parents and medical professionals on how to care for a child with NF1. To order a copy click here.


Attendance Letter

Many children with NF1 or any other medical condition rarely get the 100% certificates given out at school, due to hospital appointments, illness etc, this letter is to send to the Head explaining why it’s not correct to discriminate. Click here to download the Attendance Letter.

Letter for School

Whilst CTT cannot comment on how a particular child is at school, we have produced a generic letter to explain how NF1 can affect a child in school. Click here to download the Letter for School. There is also a PowerPoint presentation for school assemblies or classes which can be downloaded here.

CPD Module: Understanding neurofibromatosis type 1 (NF1)

CPD module on NF1 for professionals, created in partnership with Health Professional Academy with the video being produced by Health Sketch. Click here to take the module.

We have produced a booklet on explaining an NF1 diagnosis to your child using our mascot Patches.

We are also happy to send out to hospitals,GP’s and health visitors please contact us directly.

Click here to order the booklet

CTT aims to complement other NF charities, there are lots of great information leaflets out there – you just need to know where to look.