“It’s really hard knowing there is a drug out there that if I can’t get then my life is going to be over.” – Canadian patient with Erdheim-Chester Disease
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.
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.
