by Asmaa Javed | Dec 31, 2017 | Voices of ECD
ECD Global Alliance community member writes on his involvement in the Dabrafenib and Trametinib therapeutic trial at the National Institutes of Health.
by Asmaa Javed | Dec 31, 2017 | Voices of ECD
ECD Global Alliance Volunteers Recognized During National Volunteer Week By Elizabeth Anderson, May 16, 2017 In the U.S., from April 23 – 30, volunteers from around the world were acknowledged for their contributions. The ECD Global Alliance (ECDGA), a non-profit...
by Asmaa Javed | Dec 31, 2017 | Voices of ECD
An Erdheim Chester Experience from a Chinese ECD Patient: 2012 to 2017 As written by Anzhen Qin, April 27, 2017 My First time hearing this rare disease’s name was December 2012 when I received a internal fixation surgery on my left arm. My doctor made a slip of my...
by Asmaa Javed | Dec 31, 2017 | Voices of ECD
The Boy with Erdheim-Chester Disease 15-year-old is diagnosed with ultra-rare blood cancer found predominately in adults and lives to tell the tale By Elizabeth S. Anderson, ECD Global Alliance July 13, 2017 “Do you know any other young adults with Erdheim-Chester...
by Asmaa Javed | Dec 31, 2017 | Voices of ECD
The Fresh Faces Project Stands With ECD Survivors: These Are Their Stories Interview with Dawn Smith By Calynn M. Lawrence December 2017 I was born and raised in Chicago by a loving mother who not only taught me how to be the best mom I could be, but also gave me the...
by Asmaa Javed | Dec 31, 2017 | Voices of ECD
Caitlyn Captures Hope This inspiring young advocate shares her thoughts on ECD. By Jessica Corkran, ECD Global Alliance November 28, 2017 Meet Caitlyn Walch, patient advocate star in the making. As an 11-year-old granddaughter of ECD patient Tony Giambra, she has been...
