What’s New?

The May 2018 website update includes the following changes and additions.  Thank you for visiting!

• Announcements include the new Registry for Patients with Erdheim-Chester Disease.
  • See the ECD Registry web page for details about this database and to participate.
  • Find out more about this important announcement in the associated Press Release.

• Studies/Trials includes a new caregiver survey study!  This study was developed to evaluate the needs of caregivers of patients with ECD, their quality of life, and how caring for a patient with ECD affects the family and life at home.  Find out more and participate: Erdheim-Chester Disease Caregiver Needs Surveys.

• The 2018 ECD Patient & Family Gathering lodging information and schedule of events are now listed to help you plan your trip to Orlando!

• The 2018 Medical Symposium registration is open. Invite your physician to attend, collaborate, and learn more about your care.

• On the Funding Opportunities, you can find information about the Histiocytosis Association 2018 Research Program is now accepting proposals for histiocytic disorders, including Erdheim-Chester Disease. Proposals must be received online by July 1, 2018.  See also www.histio.org/RFRP.

• The following language pages have been updated with new information on treatments, events, and more.
  • Dutch / Netherlands
  • Italian / Italiano
  • Portugues/Portuguese

• The Knowledgeable Doctors page now includes contact information for the following:
  • Gaurav Goyal, M.B.B.S
    Mayo Clinic, Rochester, MN
    Division of Hematology- Medical Oncology
    Phone: 507-284-2511
    Fax: 507-266-4972
    Email: Goyal.Gaurav@mayo.edu

• New chat session summaries have been added for 2018.

• New members have been added to Member Locations.

• The following full-text medical journal articles have been added to the 2018 list.
  • A Rare Case of Chylous Ascites Gastroenterology
  • Thoracic involvement in Erdheim-Chester disease: computed tomography imaging findings and their association with the BRAFV600E mutation
  • The Hairy Kidney of Erdheim-Chester Disease

• In case you missed it, the most recent e-newsletter is available: February/March Newsletter.
  See all ECDGA Newsletters and sign up for future emails.