A charity registered in England and Wales (no ) and in Scotland (no. SC039299). A company Limited by Guarantee (Number ) Implementing the UK Strategy for Rare Diseases Alastair Kent #raredisease

A charity registered in England and Wales (no ) and in Scotland (no. SC039299). A company Limited by Guarantee (Number ) 2004 DG Sanco Rare Diseases Task Force 2008 Commission Communication on Rare Diseases 2009 Council of Ministers Recommendation  Unanimous  National plans of Strategies by Genetic Alliance UK establishes Rare Disease UK as a multi-stakeholder Campaign 2013 UK Strategy for Rare Diseases A Bit of History

A charity registered in England and Wales (no ) and in Scotland (no. SC039299). A company Limited by Guarantee (Number ) 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 The UK Strategy

A charity registered in England and Wales (no ) and in Scotland (no. SC039299). A company Limited by Guarantee (Number ) 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 Implementation

A charity registered in England and Wales (no ) and in Scotland (no. SC039299). A company Limited by Guarantee (Number ) A strategy without implementation is just fluff. But.....

A charity registered in England and Wales (no ) and in Scotland (no. SC039299). A company Limited by Guarantee (Number ) 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 UK Rare Disease Forum

A charity registered in England and Wales (no ) and in Scotland (no. SC039299). A company Limited by Guarantee (Number ) All stakeholders have a part to play A serious health issue rare diseases 1 in 17 affected 3.5 million across the UK Too important to leave it to “somebody else” A Shared Responsibility

A charity registered in England and Wales (no ) and in Scotland (no. SC039299). A company Limited by Guarantee (Number ) Thank You Join the campaign – make progress irresistible

A charity registered in England and Wales (no ) and in Scotland (no. SC039299). A company Limited by Guarantee (Number )