On Rare Disease Day 2019, I got to join Patricia Weltin, founder of Beyond the Diagnosis, Pawtucket. RI, to unveil this portrait of Amber. She was born with the rare Giant Axonal Neuropathy. This portrait was part of a larger exhibit, sponsored by Beyond the Diagnosis, that features kids and young adults with genetic disorders and other rare diseases. Each portrait was beautiful and inspiring in portraying the reality of these kids. That is, none are defined by their diagnoses. All have a beauty in every sense of the word. The unveiling was held at NIH on February 28. Credit: NIH
