Patient-to-Patient
Case Log is a table that provides information about some of the first patients to join the ECD Global Alliance in 2008. This log has not been updated since March 2009 although it is hoped to be updated in the first half of 2010. If you are a patient and would like your information to be included, please send your information to support@erdhiem-chester.org.
Case Locations is a table that shows the location of ECD patients registered with the ECD Global Alliance.
The ECD Networking Directory provides a mechanism for patients and caregivers affected by ECD to connect with each other. For those wishing to participate, the above link provides access to a form that must be completed, signed and sent into the organization. Once you have done this your information will be included in the ECD Networking Directory and you will receive a copy.
The
following are links to other websites.
Blogs
and eGroups
The above contains links to blogs and eGroups that have been created by members
of the ECD Global Alliance.
Message Board
The above is a link to the Histiocytosis Association of America (HAA) website.
The HAA raises funding for research on histiocytic diseases. Although this
organization is focused primarily on childhood diseases, they do offer a message
board for all the histiocytic diseases.
ECD Patient Learns to Scuba Dive
The above is a link to a local news story about a young woman with Erdheim-Chester
Disease who has been blinded by the disease. In spite of this she learned to
scuba dive.
Last updated: July 5, 2010