목차
Title page
Contents
Introduction 2
Document summary 2
Policy Context 3
An update on progress in 2019/20 5
Theme 1. Empowering Those Affected by Rare Diseases 5
Theme 2. Identifying and Preventing Rare Diseases 6
Theme 3. Diagnosis and Early Intervention 8
Theme 4. Coordination of Care 9
Theme 5. The Role of Research in Rare Diseases 10
Annex 1. 2020 actions to implement the 51 commitments 14
Annex 2. Measuring Tangible Progress 22
Annex 3. UK Rare Disease Forum Conference 2019 Agenda 29