PRE-CONFERENCE WORKSHOP DAY - Wednesday May 29, 2024

9AM – 12PM | WORKSHOP A

Precision Communication in Gene Therapy: Crafting a Shared Language for Real-World Impact

  • LEONARD VALENTINO PROFESSOR, ENTREPRENEUR IN RESIDENCE, PATHWAY TO CURES, Rush University
  • Michaela Jones Global Medical Affairs, Hemophilia Gene Therapy (CRISPR/Cas9) & Thrombosis, Regeneron Pharmaceuticals Inc
  • Craig Kessler Professor, Georgetown University

Synopsis

Effective communication in gene therapy is crucial for ensuring patient understanding, building trust, and managing expectations to ensure successful shared decision making.

This workshop delves into the intricacies of gene therapy terminology, exploring collaborative efforts to establish a shared glossary and redefine language to align with realistic goals.

Attend this session to:

  • Discuss the importance of health literacy in gene therapy communication
  • Explore the need for a comprehensive glossary of communication terms in the gene therapy field
  • Discover the potential role of industry and patient advocacy organizations in collaboratively shaping and disseminating this glossary
  • Debate the historical impact of the term “cure” and proposing alternative language for realistic goals in gene therapy contexts
  • Delve into strategies for industry collaboration with patient-focused groups to develop and implement agreed-upon language

12PM – 1PM | LUNCH

1PM – 4PM | WORKSHOP B

Collaborative Innovation in Gene Therapy Patient Engagement: Insights from Ultragenyx and International Foundation for CDKL5 Research (IFCR)

  • Kristin Voorhees Director, Patient Advocacy, Ultragenyx
  • Karen Utley President and Co-Founder, International Foundation for CDKL5 Research

Synopsis

Join us for an interactive workshop where we delve into the intricacies of collaborative innovation in gene therapy patient engagement, drawing on the experiences of Ultragenyx and the International Foundation for CDKL5 Research. This session offers a unique opportunity to exchange real-world challenges, solutions, and best practices in navigating and building strong partnerships between patient advocacy groups and industry partners.

Interact with peers to:

  • Explore challenges faced when working with industry partners and learn how Ultragenyx and IFCR navigated building trust through transparent communication
  • Understand the critical role of trust-building in overcoming challenges and maintaining positive relationships
  • Gain insights into Ultragenyx’s approach to transparency and proactive issue resolution, ensuring a positive working relationship
  • Learn how to address issues like information gaps and miscommunication, emphasizing the need for transparency and openness
  • Understand the challenges posed by external factors and the importance of transparently managing expectations
  • Explore the significance of involving advocacy leaders in the early stages of clinical trial design, clinical trial readiness, and material development
DAY ONE
DAY TWO