P314: Benefits of collaboration between clinicians and rare disease organizations

20260 citationsJournal Articlediamond Open Access

Authors

Tena Rosser · Children's Hospital of Los Angeles

Derek Bauer · University of Rochester Medical Center

Pamela Trapane · University of Florida Health

Abstract

There are approximately 7,000 different rare diseases. Geneticists play a crucial role in the diagnosis, management, education, and counseling of families impacted by these disorders. Rare disease organizations (RDOs) can be a valuable resource for clinicians and their patients.

Topics & Keywords

Genomics and Rare Diseases Health Systems, Economic Evaluations, Quality of Life Neurogenetic and Muscular Disorders Research

Publication Details

Published in: Genetics in Medicine Open

Volume 4, pp. 103808-103808

DOI: 10.1016/j.gimo.2026.103808

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P314: Benefits of collaboration between clinicians and rare disease organizations

Authors

Abstract

Topics & Keywords

Publication Details