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, and malignant histiocytosis.
A new link to “A visual Education Center for Family Caregivers” was added to the “Caregiver Info” page. The information presented at this site is for caregivers of people suffering from Alzheimer’s Disease. However, the information is made available in that some of the issues associated with caregiving span all diseases.
Three ECD-knowledgeable physicians’ contact information were added to the “Physicians” page. They are:
Carl Allen MD, PhD
Assistant Professor, Department of Pediatrics, Section of Hematology-Oncology
Baylor College of Medicine
Texas Children’s Cancer Center
Feigin Center
1102 Bates St
Houston, TX 77030
Telephone: 832-824-4312
Fax: 832-825-1206
e-mail: ceallen@txccc.org
Ronald Jaffe, MB.BCh
Department of Pathology
Children’s Hospital of Pittsburgh
4401 Penn Avenue
Pittsburgh PA 15224
e-mail: Ronald.jaffe@chp.edu
Telephone: 412-692-5657
Kenneth L. McClain, MD, PhD
Professor, Department of Pediatrics
Section of Hematology/Oncology
Baylor College of Medicine
6701 Fannin St., Ste. 1410
Houston, TX 77030
Telephone: 832-822-4208
Fax: 832-825-1503
e-mail: kmcclain@txccc.org
The Case Locations as found on the “Patient-to-Patient” page, was updated.
New 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:
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:
The”What is ECD?” page was updated to state that there are documented cases of ECD appearing in childhood.
The “Home” page was updated to encourage patients to keep copies of their medical records to aid in their treatment as well as to help researchers.
An Organizational Status for May 2011 was added to the “What’s New?” page.
Chat summaries were added to the “Chat Room” page.