Advice to Newer Patient Groups

  Kristin Smedley, founder of Curing Retinal Blindness Foundation (CRBF) discusses how she used social media and other tools to build her patient advocacy organization and her brand. CRBF is recognized as a leader in the blindness advocacy field, largely due to...

Patient Advocacy Podcast

  Kevin Freiert, a former Pfizer executive, talks about his podcast ‘Improbable Developments’ that interviews patients and patient advocates in order to learn more about how them and to raise awareness about their disease and/or get a medicine developed for their...

Orphan Drug Development, Pricing, and Access

  Dennis Jackman, Senior Vice President, Public Affairs at CSL Behring discusses rare disease drug pricing, patient involvement in the drug development process, and drug access. With regard to the latter issue, Jackman said, “if the community and industry,...