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 Resource Centres create a bridge between patients and carers. Read our fact sheet and case studies to find out more Fact Sheet and Case Studies ShareThis Consult 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, Portugal Paula Brito e Costa, Rarissimas, Portugal EURORDIS Membership Meeting 2013 Dubrovnik, Workshop 10: Social & medical services initiated by patient organisations Frambu Resource Centre, Norway Lisen Mohr, Frambu, Norway EURORDIS Membership Meeting 2013 Dubrovnik, Workshop 6: Specialised Social Services: need, policy, case studies NoRo 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 Centre, Norway Lisen Mohr, Frambu, Norway EUCERD Joint-Action Workshop on “Guiding Principles for Specialised Social Services”, 2012, Romania NoRo Resource Centre, Romania Dorica Dan, RONARD, EUCERD & EURORDIS, Romania EUCERD Joint-Action Workshop on “Guiding Principles for Specialised Social Services”, 2012, Romania