An innovative and collaborative partnership between patients with rare disease and industry-supported registries: the Global aHUS Registry

Patients are becoming increasingly involved in research which can promote innovation through novel ideas, support patient-centred actions, and facilitate drug development. For rare diseases, registries that co...

Source: Orphanet Journal of Rare Diseases - November 21, 2016 Category: Internal Medicine Authors: Len Woodward, Sally Johnson, Johan Vande Walle, Joran Beck, Christoph Gasteyger, Christoph Licht and Gema Ariceta Source Type: research