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F1 is a genetic condition that occurs in around 1 in 3,000 people.1 NF1 isn’t spread like a cough or cold, it’s decided by DNA. DNA determines all kinds of things about us, such as how tall we are, and what colour eyes and hair we have. People with NF1 have differences in their DNA that can’t be controlled by factors outside of their body. NF1 can be passed down through the DNA of a child’s mother or father. However, in up to 50% of cases, the condition is the result of a spontaneous genetic change in the child’s DNA, meaning they are the first in the family to have it.

Early diagnosis allows patients and carers access to help, resources and support.

NF1 causes tumours to grow on nerves and affects everyone in a different way. NF1 can lead to learning difficulties – sometimes needing extra support at school – and problems with bones, eyes and the nervous system.

Having multiple birth marks may be a sign of NF1; 95% of those with NF1 will have 6 or more brown-coloured marks (Cafe au Lait marks).

NF1 can affect anyone: Half of those with NF1 will have inherited the condition from a parent with NF11, 2 The other half will be the first in the family with no previous family history.1

Symptoms and severity of NF1 can change over time. making life-long monitoring important.

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