Update Information for December 31, 2011 (V 2.24) Information was added to the “Home” page and an icon was added to the menu bar for Rare Disease Day, which is to be observed on February 29, 2012. The ECD Global Alliance is a proud partner of the National Organization of Rare Disorders (NORD) in observing […]
Update Information for November 30, 2011 (V 2.23) The “ECD Global Alliance” page now has information about the Development Director recently added to the organization’s staff. The “Patient-to-Patient” page was updated to add a link to a version of the “A Man Blessed” story that does not require a subscription to a newspaper. A link […]
Update Information for October 31, 2011 (V 2.22) A short writeup about obtaining social security disability was posted on the “Resources” page. An article describing the exercise program of an ECD patient entitled, “The former Bradford doctor having to adapt to a life-changing condition” was added to the “Patient-to-Patient” page. New links were added to […]
Update Information for September 30, 2011 (V 2.21) Three published news articles about Erdheim-Chester Disease were added to the “Patient-to-Patient” page. They are: A Rare Disease Leaves a Man Feeling Blessed – An inspirational first person account from someone who is living with ECD. Erdheim-Chester Patient Gets Lungs – A short article appeared in the […]
Update Information for August 23, 2011 (V 2.20) Information about a new ECD study being done at the NIH was added to the “ECD Studies” page. The NIH study, “Clinical and Basic Investigations into Erdheim-Chester Disease” is a natural history study designed to better understand the disease, identify its cause, and classify it according to […]
Update Information for July 31, 2011 (V 2.19) An annoucement about a matching donation opportunitywas place on the “Main” page. All donations, up to $50,000, made between July 23, 2011 and January 1, 2012, will be matched thanks to a generous private donation. If you donate $10, the organization will receive $20, thanks to your […]
Update Information for June 30, 2011 (V 2.18) A news article about an ECD patient and her husband, working to help raise awareness and research funds, was added to the “Patient-to-Patient” page. Informaton about a fundraiser this couple hosted was added to the “How Can I Help?” page. A new link was added to the […]
Update Information for May 31, 2011 (V 2.17) A new link was added to the “ECD Studies” page to provide information about research being planned at Texas Chidren’s Hospital / Baylor College of Medicine in Houston, Texas. The Histicytosis Research Laboratory there is planning to develop a comprehensive genomic database for LCH, JXG, RDD, ECD, […]
Update Information for April 30, 2011 (V 2.16) New entries were made to the “Abstracts of Published Papers” as listed under the “Technical Papers” selection for recently published papers. The addition is as follows: An article published in the journal, Journal of Clinical Oncology. The article is entitled, “Scintigraphic Diagnosis of Erdheim-Chester Disease” and is […]
Update Information for March 31, 2011 (V 2.15) A link to a radio interview of two ECD patients was provided on the “Patient-to-Patient” page. New links were added to the list of published articles, accessible without charge on the internet, as found on the “Technical Papers | Published Papers” page. They are: Carl E. Allen, […]
Last updated: July 10, 2015
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