Busy Agenda for 2015 Membership Meeting in Madrid

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The 2015 EURORDIS Membership Meeting (EMM) will take place in Madrid from 29 - 30 May.

Organised in a different European city each year, the EMM provides 200 attendees, made up of mainly patient organisation representatives, plus healthcare professionals and policymakers, with the opportunity to network, share best practices and take part in workshops.

The two day event, organised in collaboration withFEDER, the Spanish National Alliance for Rare Diseases, will begin with the General Assembly, during which the EURORDIS 2015 – 2020 Strategy will be presented. At this stage, four directors will also be elected to the EURORDIS Board of Directors.

The Meeting will then be broken down into several plenary sessions, the first of which will focus on European Reference Networks (ERNs) and will address issues such as how to set up and organise ERNs, as well as how to involve patients in their development. Next, four breakout sessions will take place, during which patient representatives will discuss the organisation of ERNs by therapeutic areas.

The Plenary Session on Saturday morning will look at outcomes of national conferences and how existing or promising positive options in national plans or strategies can inspire other countries.

This will be followed by a range of capacity building workshops that will be based on key findings of national conferences and rare disease strategies. These are organised with the aim of giving patients the knowledge needed to advance rare disease policies and services in their country and local communities. These workshops will start by assessing the current state of national conferences and rare disease strategies, focusing on topics including Centres of Expertise, research, and access to orphan medicines and social services, and then look at how to move forward in order to sustain the process of developing national and European rare disease policies.

To Attend

If you would like to attend, information on how to register will be available on the membership section of the EURORDIS website in early 2015.

The Meeting will take place in English at the Rafaelhoteles Atocha Hotel, with the Plenary Session on Friday 29 May simultaneously translated into Spanish.

More Information

For more information, you can view presentations from the EMM in 2014 or 2013.

We look forward to seeing you in Madrid!

Eva Bearryman, Communications Manager, EURORDIS

Page created: 03/12/2014
Page last updated: 02/12/2014