Update Information for December 31, 2012 (V 2.36) New entries were made to the “Abstracts of Published Papers” as listed under the “Technical Papers” selection for recently published papers. The additions are as follows: An article published in Blood. The article is entitled, “Dramatic efficacy of vemurafenib in both multisystemic and refractory Erdheim-Chester disease and […]
Update Information for December 16, 2012 (V 2.35) The “ECD Studies” page was updated to include new studies and update information regarding existing studies. The “What is ECD?” page was updated to include reported B-RAF inhibitors (vemurafenib) and Etanercept (trade name Enbrel) treatments. The 2012 End-of-Year Newsletter was placed on the “What’s New?” page. A […]
Update Information for November 3, 2012 (V 2.34) The “Patient-to-Patient” page and the “Home” pages were modificed to add a link to a video featuring Walt Comer, an ECD patient. Walt and his wife tell of their experiences of living with ECD. The “How Can I Help?” page was updated to state that any ECD […]
Update Information for October 7, 2012 (V 2.33) The ECD Global Alliance has a matching pledge donation. For every dollar raised by the organization between June 1, 2012 and December 31, 2012, an additional dollar will be donated to the organization by a generous private donor. PLEASE, donate today if you want to help researchers […]
Update Information for August 30, 2012 (V 2.32) Links were added to the list of previously published articles, accessible without charge on the internet, as found on the “Technical Papers | Published Papers” page. They are: Koh TW, M Fadli, SL Vijaya Kumar, Ashutosh S Rao Rare Presentation of a Rare Disease (Erdheim-Chester disease): A […]
Update Information for August 18, 2012 (V 2.31) A new ECD-knowledgeable physician’s contact information was added to the “Physicians” page as follows: Mark Heaney, MD, PhD Memorial Sloan-Kettering Cancer Center Weill Medical College of Cornell University 1275 York Ave. New York, NY 10065 USA Telephone: 212-639-2275 Fax: 212.772.8550 Email: HeaneyM@mskcc.org A new link as added […]
Update Information for July 15, 2012 (V 2.30) A matching donation opportunity announcement was added to the “Home” and “How Can I Help” pages. A private challenge donation has been made to double any donations made to the organization, up to $50,000. This makes it a great time to give to support patients and their […]
Update Information for June 14, 2012 (V 2.29) The contact information for Dr. Kleanthis Manousaridis, an ophthalmologist, was updated on the “Physicians” page. The link to the Retroperitoneal Fibrosis support group, as found on the “What is ECD?” page, was updated to http://health.groups.yahoo.com/group/retroperitoneal_fibrosisworldsupport/) A link was added for Liam’s Lighthouse Foundation, an organiation dedicated to […]
Update Information for May 12, 2012 (V 2.28) The ECD Global Alliance logo as found on the menu bar was updated, The Rare Disease Day logo was removed on the menu bar. It will be added again next year as we begin to once again recognize Rare Disease Day on the last day of February. […]
Update Information for April 6, 2012 (V 2.27) The ECD Global Alliance Board of Directors Listing as found on the “ECD Global Alliance” page was updated to show new Board members. Chat summaries were added to the “Chat Room” page. The Case Locations as found on the “Patient-to-Patient” and “ECD Global Alliance” pages, was updated. […]
Last updated: July 10, 2015
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