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 formReferral forms should be sent to: [email protected]
Ongoing 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.