Eurordis - Rare Disease Europe

EURORDIS Membership Meeting (EMM) 2015

The 2015 EURORDIS Membership Meeting (EMM) was held in Madrid on May 29-30. The EMM is an annual event that brings together 200 attendees, mainly patient organization representatives, healthcare professionals, and policymakers, to network, share best practices, and participate in workshops. The event was organised in collaboration with FEDER, the Spanish National Alliance for Rare Diseases.

The EMM started with the General Assembly, during which the EURORDIS 2015-2020 Strategy was presented and four directors were elected to the EURORDIS Board of Directors. The meeting also had several plenary sessions and breakout sessions where patient representatives discussed the organization of European Reference Networks (ERNs) by therapeutic areas. There were also capacity-building workshops based on key findings of national conferences and rare disease strategies, aimed at giving patients the knowledge needed to advance rare disease policies and services.

During the event, members approved the EURORDIS Activity/Financial Report 2014, the 2015 Action Plan & Budget, and re-elected two representatives to the EURORDIS Board. There were also meetings around the EMM, including a Council of National Alliances Meeting, a RareConnect workshop, and the official launch and inaugural meeting of Rare Diseases International, the global voice for rare disease patients.

The plenary sessions focused on national rare disease strategies and European Reference Networks (ERNs). Discussions centred on the upcoming initial call for applications from networks of Centres of Expertise and healthcare providers wanting to become part of the ERNs. EURORDIS members discussed the proposed ‘grouping’ structure of ERNs and how patients can be involved in the ERN decision and opinion-making process.

If you would like to attend next year’s EMM, information on how to register will be available in the membership section of the EURORDIS website.