Main area Roald Dahl Rare Disease Specialist Nurse Grade Band 7 Contract Permanent Hours Full time - 37.5 hours per week (Monday to Friday) Job ref 411-COM-26-8044299
Employer Alder Hey Children’s NHS Foundation Trust. Salary £49,387 – £56,515 per annum. Closing 24/06/2026.
Job overview
An exciting opportunity has arisen to join the Integrated Children’s Community Nursing team at Alder Hey as a Roald Dahl Rare Disease Nurse (Band 7). This full‑time role offers the chance to make a real difference to children, young people and families living with rare diseases.
You will act as a Roald Dahl Ambassador within Alder Hey, championing excellence in patient care, innovation, collaboration and family support, within a highly respected multidisciplinary team.
This is a rewarding opportunity for an experienced and motivated nurse with excellent clinical, communication and leadership skills who is passionate about improving the lives of patients with complex and rare conditions.
Main duties of the job
* Provide personalised community care and coordinated patient management for children and young people (CYP) with rare diseases, or syndromes without a name (SWAN).
* Support a gene discovery clinic to improve complex diagnoses.
* Lead and coordinate the patient pathway for CYP with rare diseases and medical complexity.
* Develop and deliver a specialist service based on evidence‑based principles that enhance the quality of care.
* Ensure delivery of a high‑quality, best‑practice informed service meeting the individual needs of the child and family.
* Coordinate holistic and seamless clinical care for CYP with rare diseases, integrating psychologically informed care methods.
* Lead multidisciplinary assessments covering the physical, psychological, emotional and spiritual needs of the CYP and their family.
* Support transitions and developmental milestones, including transition to adult services.
* Identify care packages to meet the specific needs of each patient.
* Collaborate with all stakeholders – MDTs, CNSs, clinical teams, consultants, therapists and community nursing teams – to improve patient flow, capacity and continuity of care.
Person specification
Qualifications
* First Degree in a relevant subject or equivalent qualification/experience.
* Evidence of continued professional development and training.
* Teaching/mentorship qualification or willingness to undertake.
Experience
* Experience working with CYP with medical complexity.
* At least 4 years post‑registration experience in children’s nursing.
* Experience working within a multidisciplinary team.
* Minimum of 2 years’ experience at Band 6 level or above.
* Experience in service design, development and implementation.
* Evidence of working across several clinical disciplines.
Knowledge
* Specialist knowledge of professional and national standards for children’s community nursing and rare diseases.
* Trust and national safeguarding policies and guidelines.
* Sound knowledge and experience of safeguarding children and vulnerable adults.
Skills
* Ability to plan, prioritise and organise own workload.
* Enthusiastic and highly motivated.
* Evidence of continued professional development.
* Capability to undertake pertinent clinical skills.
* Clear understanding and commitment to clinical governance and quality assurance.
Personal attributes
* Ability to work autonomously.
* Flexible, adaptable and innovative; willing to commit to achieving results and meeting deadlines.
* Takes initiative – sees opportunities and acts on them immediately.
* Exhibits and promotes trust values.
As black and minority ethnic (BME) employees are currently under‑represented in this area, we particularly welcome applications from members of our BME communities. All appointments will be made on merit.
Benefits
* Great flexible working opportunities
* Lease car scheme and Home Electronics Scheme
* Generous annual leave and pension scheme
* Extensive staff health and wellbeing programmes
Sponsorship
Sponsorship – Alder Hey Children’s NHS Foundation Trust is an approved sponsoring organisation. Applications will be considered from applicants requiring sponsorship alongside all other applications. Not all roles are eligible for sponsorship.
Additional information
You must have appropriate UK professional registration.
This post is subject to the Rehabilitation of Offenders Act 1974 (Exceptions) Order 1975 (Amendment) (England and Wales) Order 2020 and a Disclosure to the Disclosure and Barring Service will be required.
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