2016:

• Childhood Tumour Trust (CTT) is registered as a charity

2017:

• CTT wins a National Diversity Award.

2018:

• First order for CTT’s Body Map for the ‘Personal Child Health Record’.

2019:

• Over 300 people attend CTT family days out to Alton Towers and Chessington.
• The launch of CTT’s CPD module on neurofibromatosis type 1.

2020:

• The launch of CTT’s Zoom sessions to keep young people connected through Covid-19 and beyond.

2021:

• The unveiling of the CTT mascot, Patches.
• ‘Patches and the Very Special Diagnosis’ book is launched and is now available in seven languages, braille, British Sign Language and has been made into an animation.

2022:

• CTT take a group of young adults to a neurofibromatosis summit in New York.
• CTT hold the first young adult camp.

2023:

• CTT fund a PhD into breast cancer awareness and neurofibromatosis type 1.

2024:

• CTT launch awareness campaigns for breast cancer and neurofibromatosis type 1 .
• CTT’s first cross-border family gathering at Dublin Zoo with NF Ireland.

2025:

• BMJ paper is published, ‘Alone on our NF1 island’: a patient-led mixed-method survey study to understand the care pathway for neurofibromatosis type 1 patients in the UK.

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This article has been supported by funding from
Springworks Therapeutics and Alexion, AstraZeneca Rare Disease. The sponsors have had no editorial control or influence over the copy and the opinions are those of the contributors alone.

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