What’s New?

The March 2017 website update includes the following changes and additions.  Thank you for visiting the ECDGA webpage!

• Announcements include registration opening for the 2017 Patient & Family Gathering, Rare Disease Day awareness efforts including a new video, and an informative ECD study report.

• New press releases include:
  • A new ECD Care Center located in Tennessee has been added.
  • An ECD full-spectrum report from the NIH Natural History Study.
  • The ECDGA participation in the recent USCAP meeting.

• The following articles were added to the list of full length articles:
  •  An unusual thoracic localizations of Erdheim-Chester disease: A case report.
  • The Imaging Findings of Erdheim–Chester Disease: A Multimodality Approach to Diagnosis and Staging
  • A rare case of Erdheim-Chester disease in the breast

• New chat session summaries have been added for 2017.

• Contact information for the A Phase 2 Therapeutic Trial of the Use of Dabrafenib and Trametinib in Patients with BRAF V600E Mutation Positive Lesions in Erdheim Chester Disease has been updated in Studies and Trials.  The new contact person is Kevin O’Brien, CRNP, he can be reached by email: obrienke@mail.nih.gov or phone: 301-435-2824.

• New members have been added to the Member Locations page.

• Check out a new story featuring a patient blog that chronicles his experience with a drug trial here.