Pre-Conference Workshops - ET (Eastern Time, GMT-05:00)
Strategize on best practices in collaborating with hospital systems and research organizations to advance access and treatment development.
Uncover specific challenges and success stories in funding clinical trials and research through a consortium of pediatric hospitals across the country.
Learn more about the TORCH initiative, it’s $2 million annual funding goal and how it is creating innovation at both the hospital and local level.
- Erin Santos-Primis - President, Isabella Santos Foundation
- Andrew Satterlee, PhD - Assistant Professor, Director of the Screening Live Cancer Explants Program, University of North Carolina at Chapel Hill
High-impact storytelling is a vital tool for all stakeholders in the rare disease community—patients, advocacy groups, drug developers, and researchers—who need to inspire action and drive change. This workshop will provide participants with the opportunity to refine their rare disease narratives, understand the essential role of storytelling in advancing their missions, and explore best practices for creating stories that move audiences to act.
- Erin Finucane - Founder, Erin Finucane & Co
This session explores the rise of AFPs and specialty carve Outs, analyzing how these programs affect the pharmaceutical landscape, patient affordability and access to specialty medications. Speakers will discuss the legal, regulatory and financial ramifications that AFPs pose for consumers and employers and provide insight on potential regulatory efforts that can mitigate the impact of these programs.
- Ashira Vantree - Director Legal Strategy & Advocacy, Aimed Alliance
- Jonathan James - Chief Executive Officer, Hope Charities
Foster stronger collaboration between pharma and payers to eliminate redundancies, reduce administrative burdens and enhance the efficiency of patient navigation
Evaluate a unified digital health approach to improve adherence, streamline communication and ensure quicker access to therapies, ultimately driving better patient outcomes
Break down barriers between pharma, payers and healthcare providers, creating a frictionless experience that accelerates treatment access and improves the patient journey from diagnosis to therapy
Discuss working with ambassador programs, engagement campaigns and efforts to increase community involvement
Establish strong advocate networks and create communication strategies that resonate with communities
Understand how to balance long-term planning with need for nimble, real time response to critical issues
- Michele Guadalupe - Director of Advocacy and Access, National Eczema Association
As AFPs increasingly divert patients away from traditional coverage models, pharmaceutical companies must develop strategies to safeguard patient access to essential treatments. This session focuses on building robust patient assistance programs, collaborating with payers and ensuring compliance, while addressing the challenges posed by Specialty Carve Outs, including how AFP’s are evolving heir business models and tactics based on observations.
- Rachel Klein - Deputy Executive Director, The AIDs Institute
- Kevin Herwig - Health Policy Manager, HIV + Hepatitis Policy Institute
Participants engage in a structured brainstorming session to:
- Identify key challenges and barriers to healthcare delivery, access and patient support as discussed earlier in the workshop
- Generate innovative solutions using AI and emerging technologies, including but not limited to:
- Develop and pitch new venture ideas
- Take part in an active brainstorming to solve any lingering challenges
- Sam Dix - Co-Head of Startup Studio, Cornell Tech
- Ethan Wergelis-Isaacson - Strategy and Partnerships, Offline Studio