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Cambridge Rare Disease Network - RAREfest | Exhibit - Childhood Tumour Trust 1


Supporting those with Neurofibromatosis Type 1


Neurofibromatosis – Hard to say, harder to live with 

Childhood Tumour Trust is a growing charity whose aim is to provide opportunities for children and young people with NF1 by providing the opportunity to attend camps in the UK and USA, days out for children and their families, to raise awareness, to continue to campaign for better care, to fund research and build a national volunteer support network.

 25,000 people in the UK live with Neurofibromatosis Type 1. Many of these are children and young people. Their young lives revolve around hospital appointments, consultants, scans and operations. There is no cure. However with regular check-ups and appropriate care, many people affected with NF1 can lead fulfilling lives.

Those who are diagnosed with Neurofibromatosis (NF1) and their families are left googling what it means, there are few support groups and little support outside the specialists who know what NF is.

Childhood Tumour Trust doesn’t give you medical advice, but lets you know you’re not alone. They encourage families to meet and just talk about everything they need to talk about, with people who understand and can relate to the endless appointments, treatments and how they feel.  They aim to link people together not just in the UK but all over the world.

The charity wants to organise special days out by providing tickets to various attractions around the country so families can spend a day together away from hospital appointments and day to day living with the condition

Click to visit Childhood Tumour Trust’s website.

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