Links, News and Events about Rare Diseases in general
Author(s): E. Schaefer, Created: 2010/10/10, Reviewed by: I. Astigarraga, J. Donadieu, L. Debar, last update: 2013/03/02
Eurordis Rare Diseases Europe - The Voice of Rare Disease Patients in Europe
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 561 rare disease patient organisations in 51 countries covering over 4000 diseases.
The portal for rare diseases and orphan drugs
Orphanet is a reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.
Social economic burden and health-related quality of life in patients with rare diseases in Europe
The main aim of BURQOL-RD is to generate a model to quantify the socio-economic costs and Health Related Quality of Life (HRQOL) , of both patients and caregivers, for up to 10 rare diseases in different European countries.