CTT aims to complement other NF charities, our focus is camps, days out and to fund research, as such we are not producing our own information sheets. There are already lots of great information leaflets out there you just need to know where to look.
Whilst CTT is here to support those with Neurofibromatosis Type 1, we are not here to give medical advice.
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.
The Neuro Foundation have produced a number of useful fact sheets. a few examples are below:
- The Doctor says you have Neurofibromatosis - easy read
- Neurofibromatosis Type 1, A Guide for Families
- The Child with Neurofibromatosis Type 1 (NF1) - a guide for parents
- Talking with children about Neurofibromatosis
Children's Tumor Foundation, in the USA have some excellent fact sheets and an extensive website.
Another informative Facebook page is the Neurofibromatosis type 1 Knowledge Exchange for sharing up to date information on Neurofibromatosis type 1, administrated by Dr Carly Jim (Chartered Health Psychologist) and Dr Susan Huson (Consultant in clinical genetics).