News for Mar. 22, 2009 (V 1.1.10)

A new selection was added on the ‘Patient to Patient’ page for ‘Case Locations’.  The Case Locations list where the ECD patients represented by the ECD Global Alliance are located.

An update was made to the ‘Case Log’ found on the Patient to Patient page.  This log gives details about some of the ECD cases that are represented in the ECD Global Alliance.

A change was made to the ‘What is ECD?’ webpage suggesting those searching for an ECD knowledgeable doctor to see the Physicians page on the website or to contact the ECD Global Alliance at support@erdheim-chester.org.

Another change was made to the ‘What is ECD?’ webpage explaining how some doctors and ECD patients deal with the prescribing and taking of antibiotics.

Additional chat room summaries have been added reporting on discussions that have occurred since the last update.  (See Chat Room selection on the main menu.)

Recognition was given to the photographer who took the nature pictures that appear on the website.  Mr. John Mielcarek, a professional photographer, firefighter, EMT and ECD patient, is the artist responsible and has generously given us his permission to use these photographs on the website.  Thank you, John!

The Rare Disease Day icon on the main menu was removed.  February 28^th was recognized as Rare Disease Day by many organizations, agencies and companies within the U.S. and across the world.  The ECD Global Alliance was proud to be part of this worthwhile effort to raise awareness and to help focus a spotlight on the public health implications of rare diseases.  When considered together rare diseases are not rare and the need to do something to address them becomes much more obvious.