EUROPLAN II
Date and time
Location
NCVO
Society Building 8 All Saints Street London N1 9RL United KingdomDescription
Europlan II is an opportunity for patients and for those with an interest in the field of rare conditions to input into the policy debate around the commissioning, organising and coordinating of services in the UK. The conference is open to all stakeholders who are interested in rare diseases and will include the involvement of officials from the UK’s health departments. The event is free to attend but participants must register in advance.
Representatives from all home nations will be present and have the opportunity to speak on the issues listed in the draft agenda. Confirmed speakers include representatives from the Scottish and Welsh Government, the Department of Health in England as well as key stakeholders in Northern Ireland.
Agenda
9.00 –10.00 Registration open & networking 10.00 - 10.10 Welcome – Alastair Kent OBE, Director of Genetic Alliance UK, Chair of Rare Disease UK 10.10 - 11.30Methodology, Governance and Monitoring of the UK Strategy for Rare Diseases
UK Strategy for Rare Diseases - Robin Herbert, Health Science and Bioethics, Rare Disease Team, Department of Health
Implementation in England, Barbara Howe, Portfolio Director, Highly Specialised Services, NHS England
Wales Implementation Plan for Rare Diseases, Dr Chris Riley, Department of Health and Social Services, Welsh Government
Scottish Implementation Plan for Rare Disease, Elizabeth Porterfield, Head of Strategic Planning and Clinical Priorities, Scottish Government and Paul Currie, Policy and Implementation Manager, Planning & Quality Division, Scottish Government
UK Rare Disease Forum - Alastair Kent OBE, Chair of UK Rare Disease Forum
11.30 - 1.00
Research on Rare Diseases
Presentations from:
Dr Jonathan Berg, Senior Lecturer and Consultant in Clinical Genetics, University of Dundee
Dr Ian Frayling, Cardiff University
Dr Amy Mcknight, Queen’s University Belfast
Dr Tony Soteriou, Research Infrastructure and Growth Senior Manager, Department of Health, England
Panel Discussion, chaired by Dr Nick Sireau, Chair and CEO of AKU Society
1.00 – 1.45 Lunch 1.45 – 3.15Centres of Excellence and European Reference Networks
Stephen Jolles, Consultant Clinical Immunologist, Cardiff & Vale NHS Trust
Philip Beales, Professor of Medical Genetics at the Institute of Child Health, University College London
Fiona Stewart, Consultant in Genetic Medicine, Northern Ireland Regional Genetic Service, Belfast City Hospital
Dr Jonathan Berg, Senior Lecturer and Consultant in Clinical Genetics, University of Dundee
Panel discussion, chaired by Professor Kate Bushby, Professor of Neuromuscular Genetics
3.15 – 3.30 Conference closeOrganised by
Genetic Alliance UK works with organisations and individuals to ensure that the needs and preferences of all people affected by genetic, rare and undiagnosed conditions are recognised, understood and met.