IRDiRC is pleased to share a new publication “What Matters Ethically About How the UDN Has Changed Since Its Inception”, recently published in AMA Journal of Ethics.
For individuals living with undiagnosed rare diseases, the search for a diagnosis can be long, uncertain, and emotionally burdensome. A delayed diagnosis, or none at all, can significantly add to a patient’s suffering. The article explores how the Undiagnosed Diseases Network (UDN) has evolved and what ethical considerations come with these changes.
Read the full publication: https://journalofethics.ama-assn.org/article/what-matters-ethically-about-how-udn-has-changed-its-inception/2025-10
Listen to the interview with Dr. David Pearce (IRDiRC Chair), in Ethics Talk, discussing the article: https://journalofethics.ama-assn.org/podcast/author-interview-what-matters-ethically-about-how-udn-has-changed-its-inception