When showcasing the impact of patient advocacy, it’s essential to highlight measurable outcomes. The key question is: how are we defining and measuring success? Is success reflected in the growth and evolution of the advocacy community itself? In the ability of patients to engage meaningfully with care teams? In their improved understanding of, and ability to live with, their diagnosis? Each of these factors demonstrated value for patients and the organization. The challenge lies in clearly articulating this impact to senior leadership in ways that resonate and ensure lasting buy-in. How can you articulate the value of advocacy to your senior leadership team?

• Demonstrate different ways to measure the value of patient advocacy
• Examine how to work with cross-functional teams to ensure advocacy is prominent in every team

Advocacy thrives when it is embraced across the organization and not just within a single department. Yet legal, compliance, marketing, and communications teams can sometimes be hesitant to engage, creating barriers to patient-centered progress. A Lucid report found that 78% of employees believe that their company’s leadership could do more to promote collaboration within their organization. How can you build trust, demonstrate value, and embed advocacy strategies to ensure alignment in your company?

• Understand the value of working with cross-functional teams
• Find ways to show value and how to utilize advocacy
• Strategize how to engage teams that may be reluctant to collaborate.

When conducting clinical trials, it is widely agreed that some form of compensation to patients is appropriate. However, things become trickier when dealing with trials that require more time and resources from the patient. Lazarex Cancer Foundation stated, “Travel costs remain one of the top barriers to cancer clinical trials, leaving a staggering 93% of cancer patients without the help they need to participate.” While compensation can increase participation and address potential financial burdens, it also raises questions about incentivization and the potential for biased enrollment.

• Go over the complexities tied to compensation for patients
• Determine what is an appropriate and fair compensation

Patient advocacy has always been a driving force for change—but the way advocacy shows up is evolving. For decades, nonprofit patient advocacy organizations have led with credibility, stewardship, and deep-rooted connection to patient communities. Today, they are joined by a rising wave of individual patient leaders, influencers, and digital storytellers whose reach and immediacy are reshaping the public conversation. These new voices are not replacing the old— they’re adding dimension, urgency, and complexity to what it means to advocate.

• Explore how advocacy is evolving—and why this shift matters to patients, caregivers, and the system
• Go over the enduring role of nonprofit organizations in legitimacy, collective action, and policy advancement
• Discover the rising influence of individual advocates in accelerating awareness, storytelling, and community activation
• Understand legal, compliance, and funding considerations:
• Look to the hybrid future: What does collaboration look like between traditional and emerging advocacy voices?

Rare disease patients face unique challenges in understanding their health and accessing effective treatments. Emerging applied technologies—such as wearables and AI-driven data analysis - are reshaping how patients track symptoms, understand why they don’t feel well, and improve quality of life in real time. At the same time, media platforms play a powerful role in uniting communities, driving education, and influencing policy. How can technology and media accelerate scientific outcomes, foster patient empowerment, and create new opportunities for innovation in rare disease care

• Explore how applied technologies can deliver real-time insights into patient well-being and advance scientific outcomes.
• Understand the psychological and quality-of-life benefits of empowering patients with knowledge about their condition.
• Examine how media can bring rare disease communities together, strengthen education, and influence policy to support better patient outcomes.

This session explores how one company collaborated with a global network of patient advocates and families to co-create a robust suite of awareness and participation materials for their clinical trials. Because the studies span multiple age groups, the development process required careful tailoring to ensure materials would be age-appropriate, accessible, and meaningful for children, adolescents, and care partners alike.

• Gain insight into the perceived pain points and gaps with current recruitment and participation support materials
• Discover practical strategies for creating resources that support informed decisionmaking and strengthen patient and family engagement in clinical research

Engaging patients early in the trial process is no longer just a best practice but an expectation. Based on a study by Rare Revolution, trials that integrate patient input into protocol design can significantly reduce protocol amendments—amendments affect over 60% of trials and cost up to $500,000. But how early is “too early,” and what role should patients play in shaping protocol design? How can you form patient advisory committees and integrate patient perspectives into trial guidelines? Oftentimes, the FDA wants to see that patients are involved at every stage of a trial, what are the best ways to demonstrate that collaboration?

• Discuss how to show the FDA you are creating a drug that meets unmet needs
• Navigate how to include patients in clinical trials from the beginning stages
• Allow patients to look through the trial guidelines to determine if they are too burdensome

Collaborating with patient advocacy groups is key to understanding patient needs and shaping better clinical and product outcomes. But how can organizations engage PAGs effectively while remaining compliant, from product development through clinical trials? How can you build strong, ethical partnerships that amplify the patient voice?

• List the benefits of collaborating with patient advocacy groups across the product lifecycle
• Acquire strategies for compliant engagement with PAGs during both development and clinical trials
• Go over practical approaches to integrate patient insights into organizational decisionmaking and trial design