Strategies to Educate and Support the Entire Patient Network in Rare Disease, Oncology and Complex Clinical Trials

In today’s complex and competitive clinical trial landscape, participant education and support have emerged as critical success factors, particularly in rare disease and oncology research. Well-informed patients not only make better enrollment decisions but also demonstrate higher retention rates and provide more accurate data throughout the trial. Yet, many organizations struggle to implement comprehensive education and support strategies that adequately address the needs of patients and their care networks.

A dedicated patient engagement approach can transform clinical trials by building trust, improving outcomes and creating lasting relationships with patient communities that will positively impact both current and future studies. In this webinar, the featured speaker will share practical strategies for developing patient education programs that meet participants where they are, at every step of the clinical trial journey.

The upcoming webinar will feature Jill Anne Castle, MEd, as the guest speaker. Jill has been a state and national advocate in both education and healthcare systems for over 20 years. As a parent of a child with a rare disease and a behavioral science expert, she brings powerful, real-world insight into how education, empathy and support across the patient network can drive meaningful impact in clinical research. Don’t miss her unique perspective on bridging lived experience with professional practice.

Topics will include:

• Building meaningful relationships with patient advocacy organizations and patient communities
• Developing targeted education materials that address the unique needs and expectations of different patient populations and their care networks
• Implementing continuous support mechanisms that minimize participant burden and maximize data quality
• Leveraging patient education to build trust and relationships that extend beyond the trial through regulatory approval and commercialization
• Real-world insight through a compelling case study on how education, empathy and support across the patient network can transform clinical research outcomes

Join this webinar to learn how tailored education and engagement strategies can strengthen the entire patient network, contributing to better trial performance across challenging therapeutic areas.

Speakers

Paula Orandash, Director, Patient Engagement, Ergomed Clinical Research

Paula Orandash is a dedicated and passionate Director of Patient Engagement at Ergomed. With over three decades of experience in the pharmaceutical and non-profit healthcare industry, Paula is a seasoned expert in patient-centric approaches to drug development and rare disease advocacy.

Paula’s commitment to improving the lives of patients with rare diseases is evident in her work, where she leads initiatives to ensure that the patient voice is integrated into every stage of the drug development process. Her strategic mindset and collaborative approach have been instrumental in driving patient engagement strategies that prioritize empathy, empowerment, and inclusivity.

With a background in healthcare communications and patient advocacy, Paula brings a unique perspective to her role, bridging the gap between patients, researchers, and industry stakeholders. She is known for her ability to build strong relationships within the rare disease community and her unwavering dedication to amplifying patient voices in research and development.

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Jill Anne Castle, MEd, Director of Education and Patient Advocacy, Little Hercules Foundation

Jill Anne Castle, MEd, has been a state and national advocate in both education and healthcare systems for over 20 years.

Jill holds a Master’s in Educational Psychology and Human Relations as well as a Master’s level certification in Behavioral Analysis and Positive Behavior Support. Jill has designed curriculum and been an Adjunct Professor of Educational Psychology and Leadership at Mary Lou Fulton Teachers College at ASU. She has been a State Department Mediator, a Special Education Director and a Behavior Coach for parents, educational professionals and industry.

She is currently the Director of Education and Patient Advocacy for Little Hercules Foundation, an organization focused on access to treatment in the rare disease space. Jill also consults with several other national and state organizations to help bridge the gap between families, educational institutions and the healthcare industry.

Lastly, and most importantly, Jill is a parent of two wonderful young men, one of whom lives with Duchenne muscular dystrophy.

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