Update Information for May 31, 2011 (V 2.17)

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:

  1. N. A. Tritos, N. A. Tritos, S. Weinrib, T. B Kaye
    Endocrine manifestations of Erdheim–Chester disease (a distinct form of histiocytosis)
    J Intern Med. 1998 Dec;244(6):529-35 .
  2. Gupta A, Aman K, Al-Babtain M, Al-Wazzan H, Morouf R
    Multisystem Erdheim-Chester disease; a unique presentation with liver and axial skeletal involvement
    Br J Haematol. 2007 Aug;138(3):280. Epub 2007 Jun 6 .
  3. E. Vitelli, R. Spagliardi, V. Badioni, L. Cucurachi, and M. Riva
    8th European Congress on Epileptology, Berlin, Germany, 21 – 25 September 2008 – T220 Erdeim-Chester Disease and Epilepsy: Case Report
    Epilepsia. 2009 Apr;50 Suppl 4:1-261

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:

  1. An article published in the journal, Pathology.  The article is entitled, “Erdheim-Chester disease with extensive coronary arterial involvement ” and is without an abstract.
  2. An article published in the Abstracts of the 8th European Congress on Epileptology. Berlin, Germany. September 21-25, 2008.  The article is entitled, “T220 Erdheim-Chester Disease and Epilepsy: Case Report” with the conclusion included.

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.

Contact Us

  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

Featured Partners

Copyright 2024. All rights Reserved ECD GLOBAL ALLIANCE. A 501(c)(3) organization. EIN# 27-0759192. | Privacy Policy