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
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
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
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: DIVERSITY, 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
Synopsis
Details to be announced shortly.
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
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 Beyond the Endpoint: Preparing to Support Patients after Gene Therapy
Synopsis
- Examining challenges when gene therapy experiences differ from patient expectations or initial informed consent
- Highlighting the importance of learning from patient experiences
- 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
- Sharing potential strategies and tactics to maintain engagement and retention in long-term gene therapy follow-up studies
2:45 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
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