What’s New?

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

• The 2018 ECD Patient & Family Gathering registration is now open!

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

• Check out new stories featuring ECD patients and families:
  • On Rare Disease Day, Experts Say ‘DON’T GIVE UP’
  • Tennessee ECD Patient Trying to Beat Rare Disease

• Recent news can be found in announcements.
  • Medical Professional Education Program for Patients
  • Rare Disease Day Update
  • New ECD Care Center at Duke Cancer Institute located in Durham, North Carolina (Press Release)

• The ECDGA has welcomed Courtney Duplantis to the team.  Read more about our dedicated board and staff.

• A new pediatric oncologist has been added to the list of knowledgeable physicians.
  • Patrick K. Campbell, MD, PhD
    Assistant Member, Leukemia/Lymphoma
    Department of Oncology
    Associate Chief Medical Information Officer
    Department of Information Services
    St. Jude Children’s Research Hospital
    262 Danny Thomas Place, MS 514
    Memphis, TN 38105-3678
    t 901.595.6055 | f 901.595.3756
    www.stjude.org/consultationdisclaimer

• Additional resources about ECD were added:
  • U.S. National Library of Medicine: Erdheim-Chester Disease
  • The Importance of Influenza Vaccination
  • Caring for Your Patient with a Rare Disease is provided by the NIH to help medical personnel when presented with a rare disease case, including tips for ICD coding.

• New chat session summaries have been added for 2018.

• New members have been added to Member Locations.

• The treatments page reflects updates and additions to the following drug sections.
  • Infliximab (trade name Remicade)
  • Tocilizumab
  • Sirolimus

• The following full-text medical journal articles have been added to the 2018 list.
  • Abdominal involvement in Erdheim-Chester disease (ECD): MRI and CT imaging findings and their association with BRAFV600E mutation
  • Solving a Mystery . . . 8 Years Later
  • Single-agent dabrafenib for BRAFV600E-mutated histiocytosis Haematologica
  • Erdheim Chester Disease: description of 2 illustrative cases involving the lung

• In case you missed it, the most recent e-newsletter is available here: December/January Newsletter.