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Supporting children, young adults and their families up to the age of 30

Supporting children, young adults and their families up to the age of 30

Specialist centres

In the UK, there are two national specialist centres for Neurofibromatosis Type 1 (NF1), one is in London and the other is in Manchester. These provide expert, multidisciplinary care but are reserved for individuals with complex cases of NF1 who meet specific eligibility criteria. There are around 25000 people in the UK with NF1.  The majority of those with NF1  are not seen at either centre either because they do not meet the criteria or the lack of awareness around referral or knowledge of the centres,

See the eligibility criteria

The referral criteria for complex specialist centres for Neurofibromatosis Type 1 (NF1) in the UK are designed to ensure individuals receive the appropriate specialist care tailored to their needs. However, these criteria are subject to change. To ensure the referral is accurate and up-to-date, we strongly recommend that your doctor contacts the relevant specialist centre directly. This will help confirm the specific requirements and streamline the referral process.

Referrals to these centres are typically made by healthcare professionals for patients whose cases require highly specialised management due to severe symptoms or complications related to NF1.