DAY ONE - Thursday May 30, 2024

8:40 am Chair’s Opening Remarks

NAVIGATING CHALLENGES, FOSTERING TRUST, AND EMPOWERING UNDERSTANDING WITH PATIENT-CENTRIC GENE THERAPY EDUCATION

8:50 am Strategies for Early-Stage Gene Therapy Education with Industry- Advocacy Partnerships

  • Wendy Borsari Sr. Manager Patient Advocacy, Tenaya Therapeutics

Synopsis

  • Learn about the pivotal role of patient advocacy groups in shaping educational initiatives for rare diseases at early stages of gene therapy development
  • Explore the strategies for co-creating educational content with advocacy organizations, fostering a shared understanding of gene therapy and clinical trials within patient communities
  • Understand the importance of building trust within patient populations and how collaborative content development plays a crucial role in dispelling distrust

9:20 am Unleashing the Power of Diverse Communication Strategies in Patient Engagement

Synopsis

  • Delving into the unique communication preferences within different communities and the importance of recognizing that a singular approach may not effectively resonate with all
  • Emphasizing the need to tailor communication methods based on the dynamics of each community, whether it’s leveraging healthcare providers, community leaders, or online platforms to ensure relevance and trust
  • Discussing real-world examples of how diverse communication strategies have positively impacted patient engagement, fostering a deeper connection between industry, advocacy groups, and the communities they serve

9:50 am Details to be Announced Shortly

Synopsis

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10:00 am Speed Networking

Synopsis

Our speed networking is the ideal opportunity to get face-to-face time with the brightest minds working in gene therapy patient engagement and introduce yourself to the attendees that you would like to have more in-depth conversations with. Benchmark against industry leaders and establish meaningful business relationships to pursue for the conference and beyond.

11:00 am Exploring how to Adapt the Engagement Strategies in Communities Resistance to Gene Therapies

  • Paul Sommer Global Head Of Patient Experience And Innovation, Decibel Therapeutics Inc.

Synopsis

  • Explore the unique challenge of addressing resistance within the Deaf and Hard of Hearing (DHH) community towards gene therapy and the concept of a “cure.”
  • Discuss the delicate balance of advancing gene therapy initiatives while respecting the wishes of those who resist
  • Emphasize the importance of diversity in advisory boards, including everyday individuals, parents, Deaf and Hard of Hearing adults, and professionals with various experiences
  • Discuss the ongoing efforts to bridge the gap between gene therapy initiatives and the preferences of the DHH community

INNOVATIVE STRATEGIES IN GENE THERAPY RECRUITMENT: NAVIGATING COMPETITION, VIRTUAL ENGAGEMENT, PATIENT-CENTRIC EVENTS, AND ADVOCACY EMPOWERMENT

11:30 am Innovations in Website Strategies for Informed Gene Therapy Decision-Making

Synopsis

  • Highlight the inclusion of animations and insights from opinion leaders, enhancing the accessibility of information for patients
  • Emphasize the importance of condensing complex information into a digestible format, ensuring patients can make informed decisions with ease

12:00 pm Roundtable Discussion: Navigating the Competitive Landscape by Addressing Overlapping Trials and Patient Access

Synopsis

  • Discussing the impact of increasing competition in gene therapy trials on patient recruitment
  • Exploring collaborative approaches to prevent overlapping trials from limiting patient access
  • Reviewing proactive measures and innovative strategies to streamline recruitment, addressing stringent eligibility criteria

12:30 pm Lunch & Networking

1:30 pm Breaking Barriers in Gene Therapy Recruitment and Engagement: Navigating Trust and Co-Creation Beyond Traditional Strategies for Patients Living with Sickle Cell Disease

  • Felice Tsui Associate Director - Patient Advocacy and Medical Affairs, Editas Medicine
  • Christine Slater Associate Director, Patient Recruitment, Editas Medicine

Synopsis

  • Explore the innovative approach of co-creating recruitment campaigns with underrepresented communities, involving them in every step of the process to build trust and ensure cultural relevance
  • Delve into the role of patient advocacy in establishing trust, with insights into collaboration with patient advocates to educate communities, influence protocol changes, and contribute to the success of gene therapy trials

2:00 pm Bridging the Gap Between Informed Consent and Actual Experiences

Synopsis

  • Examining challenges when gene therapy experiences differ from initial informed consent
  • Highlighting the importance of learning from patient experiences
  • Shedding light on the journey individuals undergo in gene therapy, from eligibility assessments to post-trial realities
  • Discussing challenges faced by patients in understanding and coping with gene therapy complexities, emphasizing continuous improvement in education, informed consent and long-term follow-up strategies

2:30 pm Afternoon Break

NAVIGATING REGULATORY ENGAGEMENT FOR GENE THERAPY ADVANCEMENTS: ENHANCING COLLABORATION BETWEEN INDUSTRY, COMMUNITY, AND REGULATORY AGENCIES

3:30 pm Mastermind Session: Explore the Relationship Between the Gene Therapy Industry, Patient Communities, and Regulatory Agencies

Synopsis

  • Foster mutual understanding and effectively incorporate community perspectives in shaping regulatory decisions
  • Examine the role of community engagement in regulatory processes and its impact on decision-making
  • Identify ways to amplify the voice of the gene therapy community within regulatory agencies and ensuring sustained influence
  • Understand how information gathered through community engagements is referenced and incorporated in regulatory decision-making
  • Emphasize the need for effective communication strategies that align with regulatory expectations, ensuring transparency while maintaining compliance

STRATEGIES FOR INCLUSIVE PATIENT ENGAGEMENT: A COMPLIANCE PERSPECTIVE

4:15 pm Approaches for Navigating Compliance in Patient InvolvementApproaches for Navigating Compliance in Patient Involvement

  • Martin Wilson Chief Compliance Officer & General Counsel, Rocket Pharmaceuticals Ltd.

Synopsis

  • Understanding the significance of involving a range of professionals in patient engagement efforts, highlighting their unique perspectives and addressing challenges faced
  • Exploring compliance challenges as a critical aspect of patient engagement, emphasizing their influence on the overall success and ethical conduct of initiatives
  • Delving into risk-management regarding patient involvement in early engagement efforts

4:45 pm Chair’s Closing Remarks