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It's Not Rare to Have a Rare Disease

Official Print Publication Date
Website Publication DateJuly 09, 2014


ISBN 978 1 78412 657 5 (web only publication)
DPPAS 33387

This document is also available in pdf format (1.2MB)


Foreword from the Cabinet Secretary for Health and Wellbeing

1. Introduction

2. The Strategic Context

NHS Scotland Organisational Structures - Local, Regional and National
Palliative Care
Training, Education and Information
Infrastructure for Rare Disease Developments
Life sciences and technology innovation
Telehealth and telecare technology
Information systems, data and registers

3. Delivering the UK Strategy Commitments

4. Empowering Those Affected by Rare Diseases

5. Identifying and Preventing Rare Diseases

6. Diagnosis and Early Intervention

7. Co-ordination of Care

8. The Role of Research in Rare Diseases