What’s New?

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

• View informative presentation slides regarding your care from the recent ECD Patient & Family Gathering.

• See how you can help the ECDGA with donations during the Year-End Fundraiser!  Please join the ECDGA community this #GivingTuesday on November 28, 2017 to kick off our year-end fundraiser and help the organization win prizes!  This year, a matching donation will be made dollar for dollar from November 28 to December 31 up to $25,000!

• A new Year-End Giving Letter Template has been added to the resources page. (To have this emailed in a different format, please contact us.)

• The ECDGA welcomed two new international ECD Care Centers to the growing network.
  • Australia
    Institutions: Peter MacCallum Cancer Centre and Royal Melbourne Hospital
    Location: 305 Grattan St.
    Melbourne, Victoria
    Australia, 3000
    Contact: Michael Dickinson, MD
    Telephone: +61385599500
    E-mail: michael.dickinson@petermac.org
  • Israel
    Institution: Assuta Medical Center
    Location: HaBarzel St. 20
    Tel Aviv-Yafo, Israel
    Contact: Prof. Ofer Shpilberg and Roei Mazor, MD
    Telephone: +972-3-7644364
    E-mail: hematologyrec@assuta.co.il

• Patients can now have genetic testing of their ECD biopsy done for free via the new investigative study, “Make-an-IMPACT: Tumor gene sequencing for ECD patients worldwide at Memorial Sloan Kettering Cancer Center.”  More information can be found on the Studies & Trials under the section ECD GENETIC SEQUENCING.

• Check out new stories featuring ECD patients in radio interviews conducted during ECD Awareness Week: Joe Lofaro highlighted during Erdheim Chester Disease Awareness Week 2017 and Patient Participates in Radio Interview for ECD Awareness Week 2017.

• ECD treatment information has been updated for BRAF and MEK inhibitors to reflect the most current advances.

• New press releases have been added:
  • First FDA-Approved drug for Erdheim-Chester disease
    On November 6, 2017, the FDA approved vemurafenib (Zelboraf) for treatment of ECD in patients with the BRAF V600 mutation. This is the first ever approved treatment for ECD.
    
  • Care Network Serves Australian Rare Disease Patients
  • The ECD Global Alliance Welcomes Israel ECD Referral Care Center

• New chat session summaries have been added for 2017.

• A successful Arizona fundraiser was added to the Host Fundraisers page.

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

• An oncologist on the Knowledgeable Doctors list updated the following contact information:
  • Paul Montgomery, MD
    Boise VAMC, Oncology
    500 W Fort St
    Boise ID 83702
    Email: paul.montgomery@va.gov