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
 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rare, Rare Diseases International est une initiative d'EURORDISRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect est une initiative d'EURORDIS RareConnect Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases