Undiagnosed. Ultra-rare. United – WashU/UDNF – Community Event

The diagnostic odyssey for rare diseases is a significant challenge, often leaving patients and families lost in a maze of tests, misdiagnoses, and delayed treatment. The UDN/WashU/UDNF – Undiagnosed. Ultra-rare. United Community Event. provides the opportunity to connect, learn and work together with mutual understanding towards a future where timely and accurate diagnoses are a reality for all with rare diseases. Participants will hear from prominent leaders, engage in interactive discussions and collaborate with members of the Undiagnosed, Ultra-rare and rare diseases communities. 

Empowering the community through connection and providing reliable science based information, we will ignite advocates to define the path forward, accelerate rare disease diagnoses and shape the future by transforming the lives of millions living with rare diseases. 

Who Should Attend:

• UDN patients/families (past, present and future)
• Patient advocates and rare disease community representatives
• Clinicians, care providers, researchers
• Leaders from biotechnology and pharmaceutical companies
• Diagnostic testing industry representatives
• Policymakers and government officials
• Payers and healthcare providers

What to Expect:

• Attendees will gain valuable insights: Hear from leading local experts on the latest advancements in rare disease diagnostics.
• Collaborative Discussions: Multiple interactive opportunities and formats for cross-role discussions.  
• Patient Perspectives: Insightful presentations from patient advocates highlighting the lived experience of navigating the diagnostic odyssey.
• Industry Innovation: Discoveries and advancements in diagnostic technologies presented by leading biotech and pharma companies.
• Networking Opportunities: Connect with colleagues, forge new relationships, and build a collaborative network dedicated to ending the diagnostic odyssey.

Together, we can illuminate the path to a future where every patient with a rare disease receives a timely and accurate diagnosis.