Update Information for January 31, 2011 (V 2.13)

The Home  and How Can I Help? pages were modified to include information about an ECD study being done in Italy under the direction of Dr. Augusto Vaglio.  This study needs medical records of ECD patients to be successful.  This is a chance for ECD patients to help the medical community begin to understand Erdheim-Chester Disease more fully.

The Patient-to-Patient page was modified to add a link to include an interview from the Yorkshire Post . The interview, “Long road to diagnosis for doctor with rare condition” is about a doctor in England living with Erdheim-Chester Disease.  The Patient-to-Patient page was also modified to point to a TV segment about an ECD patient who met her future husband at a scuba dive event.

The What is ECD? page was modified to include more current information received from patients regarding methotrexate treatments.

New 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:

Myoung-Shin Kim, M.D., Chae-Hwa Kim, M.D., Seok-Joo Choi, M.D., Chong-Hyun Won, M.D., Sung-Eun Chang, M.D., Mi-Woo Lee, M.D., Jee-Ho Choi, M.D., and Kee-Chan Moon, M.D
Erdheim-Chester Disease
Ann Dermatol. 2010 November; 22(4): 439–443.

S Eyssette-Guerreau, C Job-Deslandre, M Taghian, J Donadieu, P Thierry, J Haroche, M Taylor, I Koné-Paut and TA Tran
Erdheim-Chester disease in children: clinical, radiologic, treatment characteristics of three cases
Pediatric Rheumatology 2008, 6(Suppl 1):P129

The Case Locations and Case Log, as found on the “Patient-to-Patient” page, was updated.

The Rare Disease Day Logo was added to the bottom of the menu selection.  Rare Disease Day is February 28, 2011, and everyone is encouraged to help raise awareness of rare diseases.

The How Can I Help? page was modified to link to the latest ECD Global Alliance Fundraising Policy and to add information about upcoming fundraisers.

The Grants page was modified to add more information about the ECD Global Alliance grant awarded to Dr. Lorenzo Dagna.

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. An article published in the Journal of Cutaneous Pathology.  The article is entitled, “Erdheim–Chester disease presenting with cutaneous involvement: a case report and literature review” and includes an abstract.
2. An article published in the Annals of Dermatology.  The article is entitled, “Erdheim-Chester Disease ” and includes an abstract and free online access.
3. An article publshed in Blood.  The article is entitled, “Systemic perturbation of cytokine and chemokine networks in Erdheim-Chester disease: a single-center series of 37 patients” and includes an abstract.
4. An article published in Blood.  The article is entitled, “CNS involvement and treatment with interferon-alpha are independent prognostic factors in Erdheim-Chester disease: a multicenter survival analysis of 53 patients” and includes an abstract.

The ECD Global Alliance page was modified to show an updated organizational timeline.

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

A change was made to the November 30, 2010, Website Update page to correct a grammatical error.