101: Building and Sustaining a Rare Disease Service
Abstract
A first-of-its-kind, case study-led guide co-developed with Professor Timothy Barrett (Leonard Parsons Professor of Paediatrics and Child Health, University of Birmingham) and Kerry Leeson-Beevers (Chief Executive, Alström Syndrome UK). This open-access resource offers practical frameworks for designing, developing, and sustaining rare disease services, especially relevant for clinical leads, service coordinators, commissioners, and patient organisations.
Fields of Study & Subjects
Genomics and Rare Diseases
Health Services Management and Policy
Child and Adolescent Health
Publication details
- Journal / source
- Zenodo (CERN European Organization for Nuclear Research)
- Publication date
- 1 January 2026
- Language
- EN