Foundations

The Foundations conference is the premier forum for patient advocacy organizations aimed at advancing scientific discovery and enhancing patient care. This unique event is designed to teach patient advocacy organizations how to effectively build programs and cultivate collaborations with both industry and federal agencies, ultimately accelerating therapeutic development. With over 22,000 patient advocacy organizations in the United States, participants will gain essential frameworks, relationships, and practical tools necessary to strengthen their roles within the therapeutic ecosystem. The conference emphasizes the critical need for patient-centered partnerships in therapeutic development, which can significantly reduce trial risks, improve recruitment, and enhance real-world evidence by mobilizing patient communities, supporting study participation, providing historical data, and reducing uncertainty for sponsors while enhancing trial designs through community-informed approaches. The Foundations conference is tailored for a diverse audience, including leaders of patient advocacy organizations, pharmaceutical and biotech professionals, federal agency representatives, and clinical trial designers. Attendees can expect to expand their support for medical research, collaborate more effectively with industry, and enhance their advocacy initiatives. The agenda is crafted to meet the real-world needs of advocacy organizations, offering actionable insights for all stakeholders involved in the ecosystem. Sessions will cover a wide range of topics, including understanding the research pipeline, forming impactful partnerships, and navigating NIH and FDA engagements. Notable speakers include the CEO of the Lewy Body Dementia Association, who will discuss the critical role of patient advocacy organizations in fueling scientific progress and improving lives through strategic partnerships. Furthermore, interactive sessions will introduce tools like the Research Partnership Maturity Model, aimed at helping patient organizations assess their strengths and enhance their contributions to advancing research. The conference will also explore effective advocacy strategies, the importance of patient registries, and the engagement of funders. Overall, the Foundations conference offers a comprehensive platform for dialogue, knowledge sharing, and collaboration across the advocacy ecosystem, thereby driving meaningful scientific progress and ensuring that patient voices are integral to the therapeutic development process.