Déc 31, 2012
NIH film documenting Rare Disease Day at the NIH on February 29, 2012. The first part of the video shows an ECD display and one of our members talking with Dr. Juvianee Estrada-Veras.
Déc 31, 2012
An article about Kit, an ECD patient, and her husband, Rich.
Déc 31, 2012
Walt Comer, an ECD patient, and his wife tell of their experiences of living with ECD.
Déc 31, 2012
The daughter of an ECD patient has written and performed a song about her dad.
Déc 29, 2012