Author(s): McCormack P, Kole A
Published: January 1, 2014
Journal: Orphanet Journal of Rare Diseases
Rare disease patient organisations have a tendency to be deeply involved in research development and infrastructures, and are practiced at founding strategic alliances with clinical and research networks . In building an integrated platform for rare disease databases, registries, biobanks and bioinformatics through the RD Connect project, we wanted to explore explicitly and in detail, the inclusion of rare disease patients and their advocates in RD Connect’s core activities.