Improving Clinical Care Through Learning About the Lived Experience

0

Karen’s twin sons were both diagnosed with X-linked adrenoleukodystrophy in childhood when Alexander started showing signs similar to dementia. Dr Alexandra Downes was at a paediatrician training event and listened to Karen’s moving talk about her sons. Alexandra couldn’t have known how soon she would then be drawing on the lessons she had learned from Karen’s talk.

2020 - The Unusual Suspects,
Rare Diseases,
Training
/
47 views