Summit 2025: Ending The Diagnostic Odyssey

A first-of-its kind collaborative event for Undiagnosed, Ultra-Rare & Rare disease industry, clinical and community leaders.

The diagnostic odyssey for rare diseases is a significant challenge, often leaving patients and families lost in a maze of tests, misdiagnoses, missed opportunities to participate in clinical trials, and delayed treatment. Summit 2025 brings together a diverse group of stakeholders – patient advocates, industry leaders, policymakers, clinicians, researchers and payers – to chart a collaborative path towards a future where timely and accurate diagnoses are a reality for all with rare diseases.

Why Attend:

• Gain valuable insights: Hear from leading experts on the latest advancements in rare disease diagnostics. 
• Connect with the community: Network with advocates, industry leaders, researchers, clinicians and policymakers dedicated to improving diagnoses. 
• Shape the future: Participate in collaborative discussions that will shape and define the path forward for rare disease diagnosis and treatment. 
• Ignite change: Be part of a movement that is determined to transform the lives of millions living with rare diseases.

Who Should Attend:

• Patient Advocates: The heart and soul of the rare disease community, sharing their perspectives and advocating for earlier diagnoses. 
• Biotech and Pharma Leaders: Contributing their expertise to drive the discovery and development of new diagnostic tools and therapies. 
• Leading Researchers & Clinicians: Sharing the latest in science and clinical practice and discussing new opportunities to advance diagnostic precision and reach. 
• Diagnostic Testing Industry Representatives: Showcasing promising advancements in diagnostic technologies and future possibilities. 
• Policy Experts: Shaping policy to incentivize innovation and improve access to diagnostics, clinical trials and targeted treatments. 
• Payers: Ensuring patients have access to needed diagnostic tools and expertise. 

Through a dynamic program of plenary sessions, panel discussions, workshops, and networking, Summit 2025 will foster collaboration across the rare disease landscape.

Summit Topics & What to Expect:

• Collaborative Discussions: Deep-dive sessions focused on key challenges and opportunities in rare disease diagnosis. 
• Patient Perspectives: Insightful presentations from patient advocates highlighting the human experience of the diagnostic odyssey. 
• Industry Innovation: Advancements in diagnostic science, technologies and processes presented by leading companies and medical experts. 
• Policy & Payer Solutions: Policy changes, implications and emerging models to incentivize and streamline rare disease diagnosis and care. 
• Networking Opportunities: Connect with colleagues, forge new relationships, and build a collaborative network dedicated to ending the diagnostic odyssey.