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Table 4 Education and resources that patient advocacy organizations can provide and share

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

 1. Provide training on these Guidelines.  
 2. Develop case studies of how patient advocacy organizations have worked with the biopharmaceutical industry in the past.  
 3. Trade patient-friendly toolkits with other patient advocacy organizations.  
 4. Provide education and guidance to patients concerning:  
   Clinical trial participation; informed consent and how to make a decision about participating in a clinical trial  
   The use of social media around clinical trials  
   How patients should interact with industry regarding participation in advisory groups  
 5. Provide education for academic researchers about how to communicate information about clinical trials with patients.