Update Information for Jan. 27, 2010 (V 2.1)

A logo was placed on the website to show the organization is a partner with the National Organization of Rare Diseases (NORD) to help raise awareness of rare diseases as a public health issue.

New links were added to the published articles found on the “Technical Papers | Published Papers” page.  Please note these are NOT new articles, but are older articles that have been added for completeness.  They are:

Na SJ, Lee KO, Kim JE, Kim YD.
A case of cerebral erdheim-chester disease with progressive cerebellar syndrome.
J Clin Neurol. 2008 Mar;4(1):45-50. Epub 2008 Mar 20.

Rozas Reyes P, Señaris González A, González Rodríguez CM.
Orbit xanthogranulomatosis. Erdheim-Chester disease
Arch Soc Esp Oftalmol. 2004 Oct;79(10):515-8. Spanish.

Le Goff L, Berros P, Denis D, Ridings B.
Bilateral exophthalmos diabetes insipidus: Erdheim-Chester disease. Clinical and radiological findings
J Fr Ophtalmol. 2002 Jan;25(1):57-61. French.

Boissel N, Wechsler B, Leblond V.
Treatment of refractory Erdheim-Chester disease with double autologous hematopoietic stem-cell transplantation.
Ann Intern Med. 2001 Nov 6;135(9):844-5. No abstract available.

Hansen I, Petrossians P, Thiry A, Flandroy P, Gaillard RC, Kovacs K, Claes F, Stevenaert A, Piguet P, Beckers A.
Extensive inflammatory pseudotumor of the pituitary.
J Clin Endocrinol Metab. 2001 Oct;86(10):4603-10.

Smith JR, Rosenbaum JT.
A role for methotrexate in the management of non-infectious orbital inflammatory disease.
Br J Ophthalmol. 2001 Oct;85(10):1220-4.

Leluc O, André M, Marciano S, Lafforgue P, Rossi D, Bartoli J.
Retroperitoneal complications of Erdheim-Chester disease
J Radiol. 2001 May;82(5):580-2. French.

1. A. Tan1, L. K. A. Tan, I. H. F. Choo
   Erdheim-Chester Disease Involving Breast and Muscle: Imaging Findings
   AJR 1995;164:1115-1117 0361

Caparros-Lefebvre D, Pruvo JP, Rémy M, Wallaert B, Petit H.
Neuroradiologic aspects of Chester-Erdheim disease.
AJNR Am J Neuroradiol. 1995 Apr;16(4):735-40.

Fukazawa T, Tsukishima E, Sasaki H, Hamada K, Hamada T, Tashiro K.
Erdheim-Chester disease and slowly progressive cerebellar dysfunction.
J Neurol Neurosurg Psychiatry. 1995 Feb;58(2):238-40.

Athanasou NA, Barbatis C.
Erdheim-Chester disease with epiphyseal and systemic disease.
J Clin Pathol. 1993 May;46(5):481-2.

Jakobiec FA, Mills MD, Hidayat AA, Dallow RL, Townsend DJ, Brinker EA, Charles NC.
Periocular xanthogranulomas associated with severe adult-onset asthma.
Trans Am Ophthalmol Soc. 1993;91:99-125;

Tien RD, Brasch RC, Jackson DE, Dillon WP.
Cerebral Erdheim-Chester disease: persistent enhancement with Gd-DTPA on MR images.
Radiology. 1989 Sep;172(3):791-2.

Waite RJ, Doherty PW, Liepman M, Woda B.
Langerhans cell histiocytosis with the radiographic findings of Erdheim-Chester disease.
AJR Am J Roentgenol. 1988 Apr;150(4):869-71.

Brower AC, Worsham GF, Dudley AH.
Erdheim-Chester disease: a distinct lipoidosis or part of the spectrum of histiocytosis?
Radiology. 1984 Apr;151(1):35-8.

Soler P, Chollet S, Jacque C, Fukuda Y, Ferrans VJ, Basset F.
Immunocytochemical characterization of pulmonary histiocytosis X cells in lung biopsies.
Am J Pathol. 1985 Mar;118(3):439-51.

Dalinka MK, Turner ML, Thompson JJ, Lee RE.
Lipid granulomatosis of the ribs: focal Erdheim-Chester disease.
Radiology. 1982 Feb;142(2):297-9.

Resnick D, Greenway G, Genant H, Brower A, Haghighi P, Emmett M.
Erdheim-Chester disease.
Radiology. 1982 Feb;142(2):289-95

Dee P, Westgaard T, Langholm R.
Erdheim-Chester disease: case with chronic discharging sinus from bone
AJR Am J Roentgenol. 1980 Apr;134(4):837-9.

Updates were made to the Erdheim-Chester Disease brochures available on the website.  These brochures were updated to enhance readability and to better promote the work of the ECD Global Alliance.

An update was made to the PowerPoint presentation on rare diseases and Erdheim-Chester Disease.

An update was made to the “Patient-to-Patient | Case Locations” page to show the addition of a new case that was registered with the organization.

New chat summaries were added to the “Chat Room” page.

New entries were made to the “Abstracts of Published Papers” as listed under the “Technical Papers” selection for recently published papers.  The additions are as follows:

1. A Letter to the Editor published 2010 Jan  5 in “Acta Neurochirurgica”.  The letter is entitled, “Neurosurgical biopsy as the initial diagnosis of xanthogranuloma of the Erdheim-Chester disease variety of the infundibulum and optic apparatus: letter to the editor” and is without an abstract.
2. A paper published December 2009 in Polish in the “Vnitr Lek”.  The article is entitled, “Diabetes insipidus followed, after 4 years, with dysarthria and mild right-sided hemiparesis–the first clinical signs of Erdheim-Chester disease. Description and depiction of a case with a review of information on the disease” and includes an abstract.

An update was made to the “ECD Global Alliance” page to provide up-to-date information on the organization and its structure.Some minor wording changes were also made.

A fix was made to the “interferon” link on the “What is ECD?” page.