by Asmaa Javed | Dec 31, 2012 | Uncategorized
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.
by Asmaa Javed | Dec 31, 2012 | Old News
An article about Kit, an ECD patient, and her husband, Rich.
by Asmaa Javed | Dec 31, 2012 | Uncategorized
Walt Comer, an ECD patient, and his wife tell of their experiences of living with ECD.
by Asmaa Javed | Dec 31, 2012 | Old News
The daughter of an ECD patient has written and performed a song about her dad.
by Asmaa Javed | Dec 29, 2012 | Community Chats
