Update Information for December 31, 2010 (V 2.12) Information about a new Phenotype Study being done by Augusto Vaglio, MD in Parma, Italy was added to the “ECD Studies” page. The “Grants” page was updated to announce that the ECD Global Alliance has awarded a $50,000 research grant to Dr. Lorenzo Dagna in Milan, Italy. […]
Update Information for November 30, 2010 (V 2.11) Updates were made to the treatments section on the “What is ECD?” page. Specifically, references were provided to recently published papers describing case study treatments of anakinra (Kineret) and imatinib (Gleevec) for ECD patients. The Case Log and Case Locations, as found on the “Patient-to-Patient” page, were […]
Update Information for November 10, 2010 (V 2.10a) The “How Can I Help?” page was updated to correct information about ECD Global Alliance furndraiser taking place November 15th at the Wildflower Bread Company in Prescott, Arizona. The previous announcement did not include the correct city.
Update Information for October 31, 2010 (V 2.10) The Patient Log as found on the “Patient-to-Patient” page was updated. The “How Can I Help?” page was updated with information about ECD Global Alliance furndraisers that are taking place. An update was made to the Home page to provide a link to the www.razoo.com/story/ECD-Global-Alliance website where […]
Update Information for September 30, 2010 (V 2.9) The most recent ECD Global Alliance Newsletter was added to the “What’s New?” page. An update was made to the ECD Case Locations page as found under the “Patient-to-Patient” menu selection. This update shows the latest information regarding patients registered with the organization. Additional ECD-knowledgeable physicians were […]
Update Information for August 27, 2010 (V 2.8) An update was made to the ECD Case Locations page as found under the “Patient-to-Patient” menu selection. This update shows the latest information regarding patients registered with the organization. The Donations page was renamed “How Can I Help?” page. This page now describes (1) how donation can […]
Update Information for July 31, 2010 (V 2.7) A new blog by the wife of an ECD patient was added to the “Patient-to-Patient | Blogs and eGroups” page. The blog is entitled, “A Journey Through the Maze of Rare Illness.” New links were added to the list of published articles, accessible without charge on the […]
Update Information for June 30, 2010 (V 2.6) New links were added to the published articles found on the “Technical Papers | Published Papers” page. They are: Ji Won Park, M.D., Chae Uk Chung, M.D., Ji Young Shin, M.D., Sun Young Jung, M.D., Su Jin Yoo, M.D., Jeong Eun Lee, M.D., Sung Soo Jung, M.D., […]
Update Information for May 25, 2010 (V 2.5) An update was made to the “What is ECD?” page to provide more information about two additional treatments, sirolimus and anakinra (trade name Kineret). Information about a sirolimus study can be found at “Pilot Study of Sirolimus with Prednisone as Treatment for ECD” under the “ECD Studies” […]
Update Information for Apr. 20, 2010 (V 2.4) A change was made to the “Home” page to allow more information to be displayed in an easily accessible manner. Additional information was provided on this page regarding a grant opportunity to study ECD and information on how to donate money to the ECD Global Alliance. A […]
Last updated: July 10, 2015
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