15 Apr Undiagnosed Day
April 29, 2024
Post Event Update
On April 29th, 2024, the Wilhelm Foundation, the Undiagnosed Diseases Network Foundation (UDNF), and Undiagnosed Diseases Network International (UDNI), hosted the Undiagnosed Day 2024 Event at Harvard Medical School. Presentations from Global experts highlighted the great work being done across the globe toward improving the diagnostic odyssey for the undiagnosed and ultra-rare disease communities.
This year’s theme, Building the Undiagnosed Community: Global Perspectives and Shared Action, highlights the importance of fostering international collaboration and addressing the unique needs of undiagnosed communities worldwide, including the 1 in 10 Americans living with an undiagnosed, ultra-rare, or rare disease.
Speakers included patients, caregivers, clinicians, researchers, and other stakeholders providing information and updates about the various programs and initiatives in the US and across the globe.
Undiagnosed Day Speaker Presentations
9:00 – 10:45 a.m. ET
- Keynote
- Liam Harazim
- Welcome and Introduction
- Alexa McCray – Moderator
- Helene Cederroth – Wilhelm Foundation
- Amy Gray – Undiagnosed Diseases Network Foundation (UDNF)
- The Beauty and Diversity in the Undiagnosed Community
- Rick Guidotti – Positive Exposure
- Massachusetts Legislator Comments
- Representative Marjorie Decker – Commonwealth of Massachusetts
- Undiagnosed Disease Network (UDNF) US Programs/Patient Navigation
- Michele Herndon – Undiagnosed Disease Network Foundation (UDNF)
- Undiagnosed Disease Network International (UDNI)
- Dr. William A. Gahl – Undiagnosed Disease Network International (UDNI)
- Champion Initiative and NORD Rare Disease Center of Excellence
- Dr. Mereike Mertens – NORD Rare Disease Center at Boston Children’s Hospital
- International Conference on Rare and Undiagnosed Diseases and Undiagnosed Program (UDP) in South Korea
- Professor Jangsup Moon – Undiagnosed Disease Program – South Korea
- Undiagnosed Hackathon/MARRVEL
- Dr. Shinya Yamamoto – Baylor College of Medicine
- The Five-Pointed Star of the Children’s Center for Rare Diseases at Dell Medical School
- Steve Ekker – Children’s Center for Rare Disease at Dell Medical School, Austin
- Undiagnosed Disease Network International Working Group
- Lorenzo Botto – University of Utah School of Medicine
Undiagnosed Disease Expert Panel Discussion
10:45 – 11:30 a.m. ET
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- Moderator – Alexa McCray
- Panelists:
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- Christine McGarvey – The Undiagnosed Diseases Network Foundation Patient Engagement and Empowerment Resource (UDNF PEER)
- Helene Cederroth – Wilhelm Foundation
- Amy Gray – Undiagnosed Disease Network Foundation (UDNF)
- Dr. Shinya Yamamoto – Baylor College of Medicine
- Tenesha Washington – University of Alabama – Birmingham
- Elizabeth Fieg – Brigham and Women’s Hospital
- Dr. William A. Gahl – Undiagnosed Disease Network International (UDNI)