CHILDHOOD TUMOUR TRUST
We support children, young people & their families affected by Neurofibromatosis Type 1 (NF1)
There is a large unmet need for those who do not meet the criteria for specialist care and for them we are working to ensure better care and a pathway to the specialist centres when needed.
It is almost impossible to sum up NF1 in a sentence due to the complexity of the condition, but amongst a possible plethora of symptoms & manifestations are bone deformities, epilepsy, autism, and tumours which whilst described as usually benign can cause serious issues such as mobility issues, pain and blindness.
Diagnosis remains relatively poor and we have a campaign to raise awareness of the possible significance of cafe au lait marks amongst health care professionals, particularly in early years such as Health Visitors: These are a very visual sign that NF1 should be considered but are often dismissed as birth marks.
We have an online support group of almost 2000 members and provide ways of bringing families, children, and young people together through fun zoom sessions and days out.
We also provide an SEN Advisor to help in the education system.
For more information please visit our website, facebook page or email email@example.com