miércoles, 18 de febrero de 2015

EURORDIS - The Voice of Rare Disease Patients in Europe

EURORDIS - The Voice of Rare Disease Patients in Europe

PATIENTS, ORGANISATIONS, SERVICES
Read about living with a rare disease and the services available
Read our fact sheet on rare disease resource centres

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

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