What’s New?

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

• The 2016 Patient and Family Gathering videos and Medical Symposium videos and a presentation summary have been added to the pages Events and Videos.

• A new ECD Care Center located in China has been added.  See the Press Release for this announcement!

• The Dutch language page has been updated with more information in this language.

• The following articles were added to the list of full length articles:
  • Erdheim-Chester disease, moving away from the orphan diseases: A case report
  • Systemic vasculitis associated with vemurafenib treatment: Case report and literature review
  • Quantification of tumor-derived cell free DNA(cfDNA) by digital PCR (DigPCR) in cerebrospinal fluid of patients with BRAFV600 mutated malignancies
  • Erdheim–Chester disease (ECD) Case report, clinical and basic investigations, and review of literature
  • A Case of Incidentally-diagnosed Erdheim-Chester Disease
  • Anakinra as efficacious therapy for two cases of intracranial Erdheim-Chester disease
  • Evaluation of clinicopathologic characteristics and the BRAF V600E mutation in Erdheim-Chester disease among Chinese adults

• New Chat Session summaries have been added for 2016 and 2017.

• An endocrinologist at the National Institutes of Health, Fady Hannah-Shmouni, MD, has been added to the Knowledgeable Doctors page.

• A new Fundraiser Guide and ECD Fact Flyer are now available on the pages Host Fundraisers and Resources.

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

• Check out a new article about an awareness event local to the ECDGA in Printed Stories: DeRidder Thursday Study Club Supports Efforts to Fight Erdheim-Chester Disease.

• Announcements include the updates on the recent #GivingTuesday event, the 2017 Patient & Family Gathering update, and information about Rare Disease Day 2017.