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Table 1 Background materials for the Independent Expert Panel meeting

From: Principles for interactions with biopharmaceutical companies: the development of guidelines for patient advocacy organizations in the field of rare diseases

Existing Guidance Documents  
 • Pharmaceutical Manufacturers of America (PhRMA) (United States): “PhRMA Principles on Interactions with Patient Organizations” [14].  
 • Clinical Trials Transformation Initiative CTTI Recommendations (United States): “Effective Engagement with Patient Groups Around Clinical Trials” [15].  
 • European Federation of Pharmaceutical Industries and Associations (Europe): “EFPIA Code of Practice on Relationships Between Pharmaceutical Companies and Patient Organisations” [16].  
 • BioPontis Alliance for Rare Diseases (United States and Europe): “Integrating Rare Disease Patients into Pre-Clinical Therapy Development; Finding Our Way with Patient Input” [17].  
Published Literature  
 • McCoy MS, Carnoil M, Chockley K, Urwin JW, Emanuel EJ, Schmidt H: Conflicts of interest for patient-advocacy organizations. N Engl J Med 2017;376:880–5.  
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