Day 3, Thursday, March 20th, 2025Thursday, 20 March 2025 - ET (Eastern Time, GMT-05:00)

This session provides a comprehensive update on the latest policy developments impacting the rare disease community.

• Discuss emerging policy trends and key legislative and regulatory changes

• Understand the respective implications for patients, caregivers, researchers and industry stakeholders

• Take a practical look at AI and ML to understand how to best tap into its potential whilst also remaining cautious of its pitfalls
• Learn how AI can play a key role in treatment commercialization (i.e., accelerated drug discovery, patient identification and recruitment, patient engagement, etc.)
• Understand how, in the near term, AI will radically change how we look at disease and what could prevent it from being most helpful
• Explore how AI can empower respective stakeholders, including advocates, caregivers and physicians

During this session, uncover Coalition for Clinical Trial Equity’s groundbreaking initiatives in fostering a more equitable and inclusive environment within the Rare Disease landscape. Discover how the Coalition has been instrumental in bridging the diversity gap to advance health equity. Specific initiatives include clinical trial time off/compensation, FMLA legislation and learn about the Alliance to Cure Cavernous Malformations and the Foundation for Sarcoidosis Research are driving on the ground change.

Baptist Health’s new dashboard was created to address the challenges associated with Rare Disease patient identification and diagnosis. Striving to give HCPs and manufacturers greater insight into their patients care journey, unpack the life changing data they are utilizing to create this framework and best in class model.

Alongside key stakeholders, engage in conversation on how innovative digital platforms and strategies are transforming patient access. Uncover the future of digital solutions for payers and providers to optimize the patient journey.

What’s Happening on the Hill—Legislative Trends and the New Administration

As the presidential election draws near, the potential impact of a new administration on healthcare legislation looms large. This session explores how upcoming political changes may reshape the regulatory landscape and influence key policies affecting the life sciences sector.

• Delve into the increasing frequency with which industry leaders are being called to testify before Congress, examining whether this trend is likely to continue and what it means for the future

• Analyze the evolving relationship between government and industry and gain insights into how to navigate the shifting political environment on Capitol Hill