miércoles, 13 de marzo de 2013

2013 EURORDIS Membership Meeting puts the spotlight on national plans for rare diseases

2013 EURORDIS Membership Meeting puts the spotlight on national plans for rare diseases

2013 EURORDIS Membership Meeting puts the spotlight on national plans for rare diseases

Participants at Membership MeetingThe 2013 EURORDIS Membership Meeting is being held in Dubrovnik, Croatia from 30 May-1 June. Organised in a different European city each year, the EURORDIS Membership Meeting provides a stimulating forum for patient representatives and other rare disease stakeholders to meet and exchange ideas, experiences and best practices. The Membership Meeting, held this year in collaboration with the Croatian Alliance for Rare Diseases, puts the focus on national plans for rare diseases, which, under the Council Recommendation of 8 June 2009 on an action in the field of rare diseases, all EU Member State countries are urged to develop and implement by the end of 2013. Croatia is expected to join the EU this year as a Member State and is already elaborating a strategy for rare diseases.
This year’s Membership Meeting features a jam-packed agenda beginning with a Plenary Session on the State of the Art of the National Plans, chaired by John Dart. Presentations will look at the progress and approaches of plans in a number of countries, including Croatia, Denmark, Germany and the UK. Other presentations will focus on key issues and best practices in national plans, including funding, management and monitoring.
Presentations and discussions at the EURORDIS Membership Meeting will complement the National Conferences taking place throughout Europe in 2013 via the second EU EUROPLAN project for rare disease national plans.
After the first morning’s Plenary Session, the following day and a half will be broken out into Workshops. Attendees will be hard-pressed to choose amongst the array of interesting and important topics, which includes an Introduction to National Plans (especially interesting for patient representatives who have not yet gotten involved with their country’s national plan elaboration process). Other workshop topics will focus on Funding for National Plans; Rare Disease Patient Registries; European Reference Networks & Centres of Expertise; Specialised Social Services; European Platform for Rare Disease Registration; an open meeting of the EURORDIS Drug Information, Transparency & Access Task Force; Social & Medical Services Initiated by Patient Organisations; Improving Access to Orphan Medical Products; Medicines, Side effects and Patient safety; Off-label Medicine use in Rare Diseases; Newborn Screening and Genetic Testing; and Standards of Diagnosis & Care, Therapeutic Education.

Author: Louise Taylor, Communications and Development Writer, EURORDIS
Page created: 13/03/2013
Page last updated: 13/03/2013

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