Press Releases
International Erdheim-Chester Disease Conference
TMC Houston News announces the 3rd Annual Symposium in their events section.
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 ...
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 ...
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 ...
Blind newlyweds take life in stride despite challenges
An article about Kit, an ECD patient, and her husband, Rich.
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 ...
POKIN AROUND: Cottleville, Missouri couple blindsided by rare, deadly disease
A local news story about a couple in Missouri who are learning to cope with Erdheim-Chester Disease.
Angel Hearts Launches in Seymour
An article about a man, with Erdheim-Chester Disease, who with his wife has started a nonprofit organization ...
A Rare Disease Leaves a Man Feeling Blessed
An inspirational first-person account from someone who is living with ECD.
*A version of the “A Man Blessed” ...
The former Bradford doctor having to adapt to a life-changing condition
Describes the exercise program, and related benefits, of one ECD patient, a former doctor who lives in the UK.
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