Implementing the UK Strategy for Rare Diseases

1. Implementing the UK Strategy for Rare Diseases Alastair Kent #raredisease

2. A Bit of History • 2004 DG Sanco Rare Diseases Task Force • 2008 Commission Communication on Rare Diseases • 2009 Council of Ministers Recommendation • Unanimous • National plans of Strategies by 2013 • 2009 Genetic Alliance UK establishes Rare Disease UK as a multi-stakeholder Campaign • 2013 UK Strategy for Rare Diseases

3. The UK Strategy • 51 Commitments – 31 Health Related, 20 Research • Empowering Patients and Families • Identifying and Preventing • Diagnosis and Early Intervention • Coordination of Care • The Role of Research • First time RD patients and families can have clear expectation as to what to expect

4. Implementation • UK Strategy, Four Nations, Four NHSs • Wales – Plan out for consultation, closing date 23/5/14 • England – Statement of Intent published on 26/2/14. Includes rare diseases in review of specialised commissioning • N. Ireland – Statement of Intent “imminent” • Scotland – Consultation paper promised

5. But..... A strategy without implementation is just fluff.

6. UK Rare Disease Forum • Multi-stakeholder • Patients • Four Health Departments • Four NHSs • Public Health England • Health Education England • NIHR • Royal Colleges • Monitor Implementation and report to Ministers every two years. • Deputy Chief Medical Officer appointed National Lead for Rare Diseases in England

7. A Shared Responsibility • All stakeholders have a part to play • A serious health issue • 6000+ rare diseases • 1 in 17 affected • 3.5 million across the UK • Too important to leave it to “somebody else”

8. Thank You www.geneticalliance.org.uk www.raredisease.org.uk Join the campaign – make progress irresistible