How do you inform and partner with the patient community to integrate their voice in preparation for a potential treatment approval? SmithSolve supported company advocacy and communication teams to execute a campaign spanning several months to engage and educate advocacy leaders, media and company employees, anchored by high-impact content.


  • Engage, educate, and involve XLH community pre- and post-FDA approval
  • Prepare company leadership for questions from multiple audiences
  • Support media outreach by developing communication tools that inform top-tier reporters
  • Support education on burden of disease and demonstrate the value of burosumab



  • Planned, organized, and executed a Patient Advocacy Summit five months prior to PDUFA date involving advocacy leaders, physicians, and company; discussed community needs
  • Created patient-focused disease education brochure; tested w/patients to ensure value, relevancy
  • Produced high-impact media materials to educate and secure interest from reporters:
    • Product fact sheet, corporate fact sheet, disease infographic
  • Crafted clear, accurate messages to prepare company leadership for questions:
    • Value story, key messages, comprehensive master Q&A
  • Within 24 hours of approval, executed webinar for advocacy and specialty media offering the opportunity to engage directly with company executives
  • Leveraged patient voices to:
    • Contribute to disease education and awareness
    • Demonstrate the impact of the new therapy for employees
    • Share the patient voice with media


  • Advocacy organization’s independent video announcement received 5K views in 24 hours
  • Company webinar attended by 10 advocacy leaders with positive response from community
  • Overwhelmingly positive media coverage at approval with praise for pricing strategy

“There was so much worthwhile dialogue throughout the day, it most likely could have gone for two days.” – Bill Coogan, President of the XLH Network.