by Asmaa Javed | Dec 31, 2014 | Old News
A newspaper article was written about Leslie Adler, and her experiences living with ECD.
by Asmaa Javed | Dec 31, 2014 | Old News
A picture and story (story not available online) about Bonnie Schulz, a patient living with ECD.
by Asmaa Javed | Dec 31, 2014 | Old News
A video from Memorial Sloan-Kettering Cancer Center in New York features an ECD patient, Rita, who is currently enrolled in the vemurafenib trial. Rita’s is a remarkable story that begins at the 2 minutes, 22-second mark of this 5-1/2 minute video.
by Asmaa Javed | Dec 31, 2014 | Old News
The August 2014 NIH Clinical Center Newsletter featured a story about the planned 2014 ECD Medical Symposium hosted by the NIH, in partnership with the ECD Global Alliance.
by Asmaa Javed | Dec 31, 2013 | Old News
TV interview of Kathy and Charles, two members of the ECD Global Alliance. The interview explains what motivates Kathy, President of the ECD Global Alliance, to continue searching for better treatment options for ECD and supporting the ECD community.
by Asmaa Javed | Dec 31, 2012 | Old News
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.
