Listening to patients with rare diseases.

摘要

On March 3, EURORDIS, the European umbrella organisation for patients with rare diseases, published The Voice of 12,000 Patients. The book summarises the results of two surveys (EurordisCare2 and 3), which explore the experiences of patients with 16 rare diseases in 22 European countries. Diseases chosen were dependent on existing patient organisations and included, for example Ehlers-Danlos syndrome, fragile X syndrome, and Prader-Willi syndrome.