Press Releases
Small-Town Non-Profit Grants Big Funds for Leading Research
The Erdheim-Chester Disease Global Alliance awards two grants in 2015 for top ECD research projects from leading ...
Difficult to diagnose disorders gain support
A newspaper article was written about Leslie Adler, and her experiences living with ECD.
Bonnie Schulz faces the Erdheim-Chester Disease
A picture and story (story not available online) about Bonnie Schulz, a patient living with ECD.
Bold Initiative to Transform Cancer Care
A video from Memorial Sloan-Kettering Cancer Center in New York features an ECD patient, Rita, who is currently ...
2nd Annual International ECD Medical Symposium Discussed in NIH Newsletter
The August 2014 NIH Clinical Center Newsletter featured a story about the planned 2014 ECD Medical Symposium ...
Wife fighting to save others from rare disease after husband’s death
TV interview of Kathy and Charles, two members of the ECD Global Alliance. The interview explains what motivates ...
NIH Rare Disease Day 2012
NIH film documenting Rare Disease Day at the NIH on February 29, 2012. The first part of the video shows an ECD ...
Blind newlyweds take life in stride despite challenges
An article about Kit, an ECD patient, and her husband, Rich.
ECD WaltComer Video
Walt Comer, an ECD patient, and his wife tell of their experiences of living with ECD.
Eva Melissa Barnett- Daddy’s Song
The daughter of an ECD patient has written and performed a song about her dad.
ECD Patient Interview: Long road to diagnosis for a doctor with a rare condition
A news story from the Yorkshire Post about a doctor who has been diagnosed with Erdheim-Chester Disease. He ...
ECD Patient Meets Future Husband at a Scuba Dive Event
A news story about a young woman with Erdheim-Chester Disease (see story below) who met her future husband at a ...
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