Childhood Tumour Trust (CTT) exists to ensure that nobody has to face a lifetime with NF1 alone. For the past ten years, we have provided practical support, trusted information and opportunities for connection to children, young people and families affected by NF1 across the UK.
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Neurofibromatosis Type 1 (NF1) is a lifelong genetic condition affecting around 1 in 2,500 people. Many families feel isolated, unsupported and overwhelmed following diagnosis, while low awareness of NF1 can lead to delayed diagnosis, inconsistent care and unequal access to services, treatments and research opportunities. Childhood Tumour Trust tackles these challenges by connecting families, providing trusted support and information, empowering self-advocacy, and campaigning for equitable care
Childhood Tumour Trust tackles these challenges through a combination of support, education and advocacy. We work to improve early diagnosis through our NF1 Red Book insert and training for health visitors, raise awareness among healthcare professionals, and campaign for standardised care guidelines. We bring families together through events, camps and peer support, reducing isolation and building confidence. We also empower individuals to advocate for themselves and promote equitable access to