Table 3 Probing questions from the Independent Expert Panel meeting, for possible use with the Guidelines

Identification and Engagement With Companies

 • What changes occur when more than one patient advocacy organization is involved?

 • What changes occur when more than one industry partner is active?

 • How can the challenges of having only one biopharmaceutical company in the particular rare disease space be addressed?

Patient Engagement and Patient Privacy

 • What does a great patient advocacy organization look like?

 • What are the ways that individual patient advocacy organizations can facilitate bringing back information to the disease community?

 • What are some reasons that patient advocacy organizations should be included in conversations with industry?

 • How should patient advocacy organizations handle various aspects of confidential information as an organization?

Financial Contributions

 • Should there be a cap on the total percentage of funding from pharmaceutical companies? Should the cap depend on the size of the group?

 • How should public disclosures of pharmaceutical funding be handled?

 • Can industry employees serve on the boards of patient advocacy organizations?

Clinical Trial Communication and Support

 • How should patient advocacy organizations respond to misinformation on the Internet and in social media?

 • What changes occur once a drug is commercially available?

 • How should negative results of clinical trials be handled? How should that information be disseminated to the patient community?

 • How should patient advocacy organizations handle issues surrounding compassionate use?

 • Should patient advocacy organizations attempt to educate academic researchers on how to communicate with patients?

 • Should patient advocacy organizations provide education and resources to patients about the informed consent process?