EUROPLAN II National Conference
Where: Society Building, 8 All Saints Street, London N1 9RL
When: 9.00am - 3.30pm, 24th June 2014
RDUK will host a UK Europlan National Conference and use the event as an opportunity to examine the content of the UK Strategy for Rare Diseases and the national plans for implementation and look at areas which have been omitted or could be improved. A report outlining the findings of the conference will be produced and the findings disseminated to all attendees and Rare Disease UK members.
EUROPLAN is part of the EUCERD Joint Action: Working for Rare Diseases – the work is led by EURORDIS (the European Organisation for Rare Diseases) and the Italian Institute of Health at a European level and by alliances at national level. EURORDIS has recommended a number of topics which reflect the EU Council Recommendations including research into rare diseases.
There is a wide range of stakeholders with an interest in rare diseases attending the reception. This includes MPs and peers, individuals with a rare disease, family members and carers, representatives from patient organisations, commissioners, clinicians, healthcare professionals, geneticists, academics, researchers and industry representatives.
Background
The EUCERD Joint Action supports the development of comprehensive national plans and strategies for Rare Diseases, particularly through the of EUROPLAN National Conferences, which are an opportunity for patients and for those working 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 EUROPLAN mission, within the context of the EUCERD Joint Action for Rare Diseases, has the following objectives:
- to stimulate a discussion and reach a consensus on the importance of national plans for structuring all relevant actions in the field of rare diseases
- to assist and promote the development of national plans or strategies for rare diseases within EU Member States, in line with European guidelines
- to provide an instrument to support countries in designing national plans or strategies for rare diseases
In November 2010, RDUK hosted a conference as part of the EUROPLAN project, which looked at developing common standards to inform the development of national plans across the EU.
With EUROPLAN now in its second phase, sitting within the EUCERD Joint Action for rare diseases, we are holding another conference which is one of around 20 taking place across Europe and overseen by EURORDIS.
A report will be produced outlining the results of each conference which will inform the wider Joint Action in formulating tools to assist Member States in developing their plans/strategies for rare diseases.
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 - 11.30 |
Methodology, 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 Ian Frayling, Cardiff University Dr Amy Mcknight, Senior Lecturer, and Director of Postgraduate Education and Training, 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 – 3.15 |
Centres of Excellence and European Reference Networks Stephen Jolles, Consultant Clinical Immunologist, Cardiff & Vale NHS Trust Panel discussion, chaired by Professor Kate Bushby, Professor of Neuromuscular Genetics |
3.15 – 3.30 |
Conference close |
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