Erdheim-Chester Disease Global Alliance
A Nonprofit 501(c)(3) Organization
P.O. Box 775, DeRidder, LA 70634

"Supporting Those Affected by Erdheim-Chester Disease"
Medical Students at LSU Shreveport Learn About ECD
"Erdheim-Chester disease: Characteristics & Management" is presented by Filip Janku, MD, PhD
Dr. Janku presenting ECD talk
Filip Janku, MD, PhD, from The University of Texas MD Anderson Cancer Center gives talk on the characteristics and management of Erdheim-Chester disease to medical students and faculty at LSU Shreveport.
Shreveport, LA, May 26, 2017 - Medical residents and physicians at Louisiana State University (LSU) Health Sciences Center (HSC) in Shreveport learned about Erdheim-Chester disease (ECD) from ECD Care Center lead, Filip Janku, MD, PhD from The University of Texas MD Anderson Cancer Center. The audience listened to Dr. Janku discuss the characteristics and management of ECD. This awareness talk was made possible through contacts made at LSU by Gwendolyn Royal-Miller, the ex-wife of a deceased ECD patient and an ECD Global Alliance (ECDGA) volunteer. This presentation, and others like it, are playing a vital role in educating medical professionals about this ultra-rare blood cancer.  As a result of these presentations, doctors are better able to recognize ECD and potentially diagnose patients sooner and it improves their ability to help those affected by ECD.  Read more.
ECD doctors on Q_A panel
ECD Care Center physicians answer questions from other ECD-knowledgeable doctors.
ECD Care Center Network Expansion Possible Because of Donors

DeRidder, LA, - July 13, 2017 - In 2017, six new international Erdheim-Chester Disease (ECD) Care Centers have been added to the expanding network. The ability to create, facilitate, and grow the care center network is made possible by the contributions of dedicated ECD Global Alliance (ECDGA) donors. Their funds support staff in enabling connections between physicians and the planning and execution of the annual ECD Medical Symposium, which is the number one way for ECD-interested doctors and researchers to join and further the fight against ECD. The expansion of the network means that donors have impacted improved outcomes for those affected by ECD and facilitated quickened diagnosis for those searching for the cause of their illness.  Read more.
Michael pictured on a fundraising poster after being diagnosed with Erdheim-Chester disease in 2015.
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.

"Do you know any other young adults with Erdheim-Chester disease?" I asked Michael Oliver of his ultra-rare disease. "None." He replied.
Michael is now 17 years old, but he was 15 when he was finally diagnosed with Erdheim-Chester disease (ECD). ECD is a very rare type of blood cancer that can affect several organs in the body, including the brain and can progress to be life threatening, especially if left untreated. What's especially unusual about Michael, is that he is one of a handful of young adults and children dealing with a disease that predominately affects men and women in middle age. This makes Michael's ECD diagnosis even rarer than normal. 
Read his story.

ECD Care Center Network Doctor Joins New Institution
#ECDAwareness Week is September 11 - 16 around the world.
Farewell to ECDGA staffer, Elizabeth Anderson
  • Liz will be pursuing a new career opportunity in her local Kansas City, MO. We wish her the best in her new endeavors and thank her for her work with the ECD Global Alliance the past two years.