Update Information for October 6, 2014 (V 2.48)

The “Main” page was updated to include:
–  Picture of the 2014 ECD Medical Symposium Attendees
–  Picture of the 2014 ECD Patient and Family Gathering Attendees
–  Information about the 2014-2015 Fund Raising Challenge.  Please help us!
–  Information about the 2015 ECD Research Grant Opportunities.

The “ECD Studies” page was updated to correct contact information concerning the Long-term Outcome After Vemurafenib / BRAF Inhibitors Interruption in Erdheim-chester Disease (LOVE) study.

Physician contact information was updated on the “Physicians” page.

The ECD Brochures as found on the “Resources” page were updated.

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

The “Patient-to-Patient” page was updated to include an article about the 2014 ECD Medical Symposium that was published in the August 2014 NIH Clinical Center Newsletter.

The “Grants” page was modified to communicate that Letters of Intent for the 2015 ECD-GA Grant award cycle are due on April 2, 2014.  Anyone with interest in doing ECD research is encouraged to contact the organization at support@erdheim-chester.org.

The Case Locations as found on the “Patient-to-Patient” and “ECD Global Alliance” pages, were updated.

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

Links were added to the list of published articles, accessible without charge on the internet, as found on the “Technical Papers Published Papers” page.  They are:

1. Mukherjee A, Damle N, Bal C, Arora A, Singhal A, Tripathi M, Peepre K.
   Role of (99m)Tc-MDP bone scan in the diagnosis of Erdheim-Chester disease
   Indian J Nucl Med. 2014 Jul;29(3):165-7. doi: 10.4103/0972-3919.136575.
2. Midtvedt O, Gran JT, Solheim H, Kirkhus E, Spetalen S.
   A man in his forties with swelling in both orbits
   Tidsskr Nor Laegeforen. 2014 Aug 19;134(15):1472-6. doi: 10.4045/tidsskr.13.0115. eCollection 2014 Aug. Norwegian.
3. Gabbay LB, Leite Cda C, Andriola RS, Pinho Pda C, Lucato LT.
   Histiocytosis: a review focusing on neuroimaging findings.
   Arq Neuropsiquiatr. 2014 Jul;72(7):548-58.
4. Ho P, Smith C.
   High-dose methotrexate for the treatment of relapsed central nervous system erdheim-chester disease.
   Case Rep Hematol. 2014;2014:269359. doi: 10.1155/2014/269359. Epub 2014 Jun 16.
5. Antunes C, Graça B, Donato P.
   Thoracic, abdominal and musculoskeletal involvement in Erdheim-Chester disease: CT, MR and PET imaging findings.  
   Insights Imaging. 2014 Aug;5(4):473-82. doi: 10.1007/s13244-014-0331-7. Epub 2014 Jul 14.
6. Ben-Yaakov G, Munteanu D, Sztarkier I, Fich A, Schwartz D.
   Erdheim Chester – a rare disease with unique endoscopic features.
   World J Gastroenterol. 2014 Jul 7;20(25):8309-11. doi: 10.3748/wjg.v20.i25.8309.
7. Janku F, Vibat CR, Kosco K, Holley VR, Cabrilo G, Meric-Bernstam F, Stepanek VM, Lin PP, Leppin L, Hassaine L, Poole JC, Kurzrock R, Erlander MG.
   BRAF V600E mutations in urine and plasma cell-free DNA from patients with Erdheim-Chester disease.
   Oncotarget. 2014 Jun 15;5(11):3607-10.
8. Cavalli G, Biavasco R, Borgiani B, Dagna L.
   Oncogene-induced senescence as a new mechanism of disease: the paradigm of erdheim-chester disease.
   Front Immunol. 2014 Jun 13;5:281. doi: 10.3389/fimmu.2014.00281. eCollection 2014. Review.
9. Yuceler Z, Kantarci M, Karabulut N, Ogul H, Bayraktutan U, Akman C.
   Multidetector computed tomographic imaging of Erdheim-Chester disease.
   Tex Heart Inst J. 2014 Jun 1;41(3):338-40. doi: 10.14503/THIJ-13-3350. eCollection 2014 Jun.
10. Diamond EL, Dagna L, Hyman DM, Cavalli G, Janku F, Estrada-Veras J, Ferrarini M, Abdel-Wahab O, Heaney ML, Scheel PJ, Feeley NK, Ferrero E, McClain KL, Vaglio A, Colby T, Arnaud L, Haroche J.
    Consensus guidelines for the diagnosis and clinical management of Erdheim-Chester disease.
    Blood. 2014 Jul 24;124(4):483-92. doi: 10.1182/blood-2014-03-561381. Epub 2014 May 21.

The article, “Consensus guidelines for the diagnosis and clinical management of Erdheim-Chester disease” is of particular notice in that it is the first time a comprehensive and multidisciplinary group of scientists and physicians engaged in the investigation and treatment of ECD convened to establish consensus recommendations for ECD diagnosis and therapy.  This article has been translated to Spanish.  Anyone wanting a copy of the Spanish translation of the article can contact the organization at support@erdheim-chester.org.