NIH Rare Disease Day 2012 Dec 31, 2012NIH 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.
Blind newlyweds take life in stride despite challenges Dec 31, 2012An article about Kit, an ECD patient, and her husband, Rich.
ECD WaltComer Video Dec 31, 2012Walt Comer, an ECD patient, and his wife tell of their experiences of living with ECD.
Eva Melissa Barnett- Daddy’s Song Dec 31, 2012The daughter of an ECD patient has written and performed a song about her dad.
