What’s New?

The August 2016 website update includes the following changes and additions.  Thank you for visiting the ECDGA webpage!

• Updates have been added to provide information about the upcoming 2016 Patient and Family Gathering, check out the PFG Draft Agenda.

• Additions to the list of full length articles:
  • Diffuse reduction of cerebral grey matter volumes in Erdheim-Chester disease
  • Erdheim-Chester Disease with Emperipolesis: A Unique Case Involving the Heart
  • Erdheim-Chester Disease With Cardiovascular Involvement and BRAF V600E Mutation

• Three new ECD Studies & Trials have been added:
  • Treatment monitoring study at the University of California, San Diego – PREDICT.
  • Two investigative studies requiring specimens only located in Israel have also been posted.

• New Chat Session summaries have been added for 2016.

• New Press Releases include:
  • Erdheim-Chester Disease Declared a Histiocytic Neoplasm
  • Global nonprofit with local roots fights rare disease

• 28 new members have been added to the Member Locations page.

• Check out the new Printed Stories.

• Announcements include the ECD classification as a hystiocyctic neoplasm and our new partnership with The Mighty.

• An ECD Awareness Week page has been update with a Letter to Your Doctor Template to help previous physicians learn more about the disease.  Also, a new ECD Softball Event Flyer was added to the events schedule.

• The first ever Quarterly Contributor’s Newsletter was released in July to show donors our appreciation and how we put their dollars to work.

• A section regarding MEK-inhibitors was added to the Treatments page.

• The new ECD classification (hystiocytic neoplasm) was updated on the About ECD page.