Eurordis - Rare Disease Europe

Search Results for: enfermedades raras

Total Results: 22

Busy Agenda for 2015 Membership Meeting in Madrid

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 with FEDER, 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.

A aniridia: Viver como sonhou

VIVER COM UMA DOENÇA RARA A vida de Daniel com Aniridia Daniel Sanchez de Vega tinha uma semana de vida quando lhe foi diagnosticada Aniridia. Uma vez que a sua mãe, Rosa, também tem a doença, o diagnóstico foi feito bastante cedo. A aniridia, que significa “sem íris”, é uma doença genética rara que se […]