ECD Global Alliance community member writes on his involvement in the Dabrafenib and Trametinib therapeutic trial at the National Institutes of Health.
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...
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...
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...
An ECD patient, along with friends and family, set out to raise awareness of ECD and funding for the ECDGA with a local restaurant fundraiser! This radio interview helped spread the word.
