Fact Sheet and Case Studies

Resource Centres for Rare DiseasesConsult our Fact Sheet and Case Studies to learn more about Resource Centres and well established RC across Europe.

Actions performed by Resource Centres (RC) are generally specifically targeted to people living with rare diseases. These centres often function in partnership or cooperation with Centres of Expertise or constitute part of a Centre of Expertise themselves.
Download the Fact Sheet.

 

Case Study Presentations

2013

Casa dos Marcos Resource Centre portugalCasa dos Marcos Resource Centre, Portugal
Paula Brito e Costa, Rarissimas, Portugal
EURORDIS Membership Meeting 2013 Dubrovnik, Workshop 10: Social & medical services initiated by patient organisations

 

Frambu Resource CentreFrambu Resource Centre, Norway
Lisen Mohr, Frambu, Norway
EURORDIS Membership Meeting 2013 Dubrovnik, Workshop 6: Specialised Social Services: need, policy, case studies

 

Noro Resource CentreNoRo Resource Centre, Romania
Dorica Dan, RONARD, EUCERD & EURORDIS, Romania
EURORDIS Membership Meeting 2013 Dubrovnik, Workshop 10: Social & medical services initiated by patient organisations
 

2012

Frambu Resource CentreFrambu Resource Centre, Norway
Lisen Mohr, Frambu, Norway
EUCERD Joint-Action Workshop on “Guiding Principles for Specialised Social Services”, 2012, Romania

 

Noro Resource centreNoRo Resource Centre, Romania
Dorica Dan, RONARD, EUCERD & EURORDIS, Romania
EUCERD Joint-Action Workshop on “Guiding Principles for Specialised Social Services”, 2012, Romania

 

Page created: 15/05/2013
Page last updated: 19/06/2013
 
 
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