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.

Presentations

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
 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases