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Fig. 1 | Orphanet Journal of Rare Diseases

Fig. 1

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

Fig. 1

Stakeholder collaboration in the aHUS Global Registry. Patient organisations, individual investigators, national coordinators and Alexion Pharmaceuticals have direct representation on the Global Registry SAB. Individual investigators and national coordinators can also contact the sponsor, a process facilitated by the clinical research organisation responsible for the Registry

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Orphanet Journal of Rare Diseases

ISSN: 1750-1172