Alder Hey NF1 Service
The Alder Hey Neurofibromatosis Type 1 (NF1) Service is a multidisciplinary service specialising in the assessment, surveillance, management and signposting of children and young people with NF1.
Role of the NF1 Service
The Alder Hey NF1 team will:
- Provide NF1-specific surveillance
- Offer advice on NF1-related management
- Support signposting to appropriate services
- Arrange some investigations at Alder Hey where appropriate; others may be requested locally depending on individual circumstances
Who we accept
Children and young people with a diagnosis of NF1 aged 0 to 16 years.
How to refer
- Referrals should be made by completing the online referral form, or by printing the form and sending it to the “NF1 Team” at Alder Hey Children’s Hospital.
- We prefer referrals from the Consultant General or Community Paediatrician responsible for the child’s care to support a shared-care approach.
- Referrals from other specialties will be accepted if a named local Paediatrician is involved and clearly identified as the point of contact.
- A clinic letter may be accepted provided it contains all relevant information required for an NF1 referral.
Important referral requirements
- A named local Paediatrician is essential for:
- Shared-care arrangements
- Coordination of day-to-day clinical management
- Local assessments and pathways (e.g. neurodevelopmental services)
Referrals may be rejected if the local Paediatrician is not aware of or involved in the referral process.
Referral formOngoing care responsibilities
- The referring Paediatric Consultant will remain responsible for overall coordination and management of care locally, in conjunction with the NF1 service.
- We ask local teams to:
- Share relevant results, imaging, and investigations
- Update the NF1 team regarding changes in clinical status or management plans
This collaborative approach helps ensure efficient and effective care for children and young people with NF1.