Announcements

FDA Approves Zelboraf (Vemurafenib) for Erdheim-Chester Disease with BRAF V600 Mutation
Breaking
: First FDA-Approved drug for this rare disease

Zelboraf Being Considered for FDA Approval
FDA Grants Priority Review and Breakthrough Therapy Designation for Zelboraf (vemurafenib) in Erdheim-Chester Disease with BRAF V600 Mutation. Read more in the Genentech press release.

Four New ECD Care Centers Added to the Network
The Erdheim-Chester Disease Global Alliance welcomes four new international ECD Care Centers in Canada and Europe. Read more.

Natural History ECD Case Study Report Released
Dr. Estrada-Veras and cohorts provide a detailed report on the five year study conducted with 60 ECD patients.  Thank you to all the patients who participated in the ECD Natural History Study to make it possible for the information in this article to be learned and reported. The involvement of these members has helped to expand the understanding of ECD. The ECD Global Alliance and the entire ECD community are very appreciative of your efforts. Read more.

The ECDGA Welcomes Vanderbilt University Medical Center to the ECD Referral Care Center Network
Nashville, TN is the newest location that Erdheim-Chester Disease patients can go to for treatment by ECD-knowledgeable doctors. Read more.

Recent Awareness Efforts
Awareness is so critical for the future of ECD patients and families.  Thanks to the dedication of many community members, the progress continues with each and every project, here are a few recent activities.

  • Winter Skin Seminar, January 27, 2017 –  Patient and awareness warrior, Janet Bunge, offered her case report to be presented in an educational seminar in Utah. Dr. Kartha mentions the amount of time ECD patients wait for a diagnosis in hopes of bringing more awareness to colleagues. Read more.
  • Rare Disease Day, Febrary 28, 2017 – Thank you to everyone for sharing information about ECD to your friends and community.  A special thanks to Larry Hobson, patient and dedicated advocate, for creating an informative and touching video in honor of the event.  See the video here.
  • USCAP Pathology Exhibit Booth, March 6-9, 2017 – The ECDGA staff and president attended the annual pathology conference in San Antonio, TX in early March.  The booth visitors at the event were very interested in the information provided about ECD, where about half of the visitors were learning about the disease for the first time.  Read more in the press release.

First Chinese ECD Referral Care Center
The Peking Union Medical College Hospital in Beijing, China joined the ECD Referral Care Center network recently.  Xin-Xin Cao, MD leads the ECD-knowledgeable team at this center, where as many as 30 patients have been seen. Find our more in the press release!

2017 ECD Patient & Family Gathering newyork_logo_2017-pic
The 5th Annual International ECD Patient & Family Gathering will bring together physicians, patients, and families to learn about various disease management topics and to experience fellowship with others that understand this rare disease.  Please consider joining the ECD community this year in New York, NY on October 27, 2017. Find out more HERE.

Rare Disease Day is February 28, 2017
Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases.  Join the ECD community on February 28, 2017 to raise your voice, spread awareness, and be a part of this annual event supporting rare diseases like Erdheim-Chester.  Find out about this event and how you could get involved HERE.

Last updated: November 20, 2017

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  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

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