EURORDIS Membership Meeting 2015 Presentations

EURORDIS Membership Meeting 2015The EURORDIS Membership Meeting took place on 28, 29, 30 May 2015 in Madrid, Spain.

General Assembly


The General Assembly was followed by the EURORDIS Membership Meeting 2015 (EMM), with Capacity Building workshops.


Plenary session: 29/05/2015

European Reference Networks for rare diseases (ERN)

Plenary session: 30/05/2015

Workshop 1: Research

Positive examples of initiatives at a national level

From patient empowerment to an open scientific community, the experience of “Determinazione Rara” in Italy, Sara Casati, UNIAMO, Italy 

E-Rare-3 - Project presentation, role of EURORDIS, opportunities for members, Mathieu Boudes, Operations and Projects Manager, EURORDIS 

Good examples and presentation of scenarios of coordination between POs and national funding agencies, Stephanie Robertson, Canadian Institutes of Health Research (CIHR), Canada

Workshop 2: Access to Orphan Medicinal Products, treatment and care


Workshop 3: Centres of Expertise

Diversity of national landscapes for Centres of Expertise, 3 case studies:
- Denmark: Lene Jensen, Rare Diseases Denmark, Denmark
- France: Paul Gimenes, Alliance Maladies Rares, France
- Portugal: Marta Jacinto, Aliança Portuguesa de Associaçiones das Doenças Raras, Portugal

Workshop 4: Social Policy

Page created: 08/06/2015
Page last updated: 27/03/2018
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