Researchers Put a Dozen Rare Diseases on the Map

TWELVE NUMBERS THAT WILL CHANGE LIVES
By creating ICD codes for leukodystrophies, researchers put a dozen rare diseases on the map.

Julie Kiefer, University of Utah Health

Tina Holman never looks forward to bringing her daughter Savannah to a clinician they haven’t seen before. She knows that, yet again, she’ll need to explain her daughter’s rare condition, vanishing white matter disease, and answer questions about her extensive medical history. Full Story