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Table 1 Main roles and commitments of the patient advocacy representative on the Global aHUS Registry SAB

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

Promoting interest in the Registry among patients with aHUS
• Generate programme awareness and interest within the patient community
• Assist with involvement of patient support groups and individual patients
• Provide information on the aHUS Registry to potential patients
• Provide advice and support to patients on aHUS Registry-related matters
Providing input to the SAB on patient priorities
• Act as the interface with other patient advocacy groups to provide a broad patient perspective from multiple countries to the Registry
• Inform the Registry of analyses and scientific questions of interest to the patient community
• Propose, discuss and evaluate programme objectives with the Registry SAB
• Provide ad hoc review of patient-related documents such as informed consent forms, patient leaflets and similar materials
  1. aHUS atypical haemolytic uraemic syndrome, SAB scientific advisory board