Press Releases
Almost Alone: Jefferson County man is one of the few with Erdheim-Chester Disease
A local news story about a Hillsboro, Missouri man and his journey related to Erdheim-Chester Disease.
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.
First Annual Gary Brewer Memorial Run
A local news story about a high school student who is working to raise money for ECD research.
Prescott Valley woman’s rare disease triggers fundraiser for research
An article about a patient and her husband, living in Arizona, who are working to help raise awareness of ECD and ...
Angel Hearts Launches in Seymour
An article about a man, with Erdheim-Chester Disease, who with his wife has started a nonprofit organization ...
Erdheim-Chester Patient Gets Lungs
A short article appeared in the Japanese news media in September 2011. It states that the first lung transplant to ...
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.
ECD Patient Learns to Scuba Dive
A story about a young woman with Erdheim-Chester Disease who has been blinded by the disease. In spite of this, ...
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