Press Releases

2018

New York Pathologist Awarded 2017 Grant by ECD Global Alliance
The ECD Global Alliance awards Erdheim-Chester disease research grant to MSKCC to define the disease-initiating cell population in ECD and compare genetic alterations.

2017

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

Care Network Serves Australian Rare Disease Patients
The Erdheim-Chester Disease Global Alliance is proud to announce the first ECD Referral Care Center to be located in Australia.

The ECD Global Alliance Welcomes Israel ECD Referral Care Center
Assuta Medical Center joins elite group of hospitals skilled in treating Erdheim-Chester disease patients.

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.

Rare Disease Care Network Grows to Help More Patients
The Erdheim-Chester Disease Global Alliance adds four new ECD Care Centers in Canada and Europe.

ECD Care Center Network Expansion Possible Because of Donors
Funding from ECD patients and their family and friends opens access to treatment facilities regardless of patient location.

Residents at LSUHSC Shreveport Learn About ECD
“Erdheim-Chester disease: Characteristics & Management” is presented by Filip Janku, MD, PhD

NIH Researchers Educate Doctors About ECD in New Orleans
Erdheim-Chester Disease and the NIH Undiagnosed Disease Program were the topics of discussion at joint LSU and Tulane University event.

The Erdheim-Chester Disease Global Alliance Raises Awareness of ECD at USCAP 2017
Pathologists eagerly engage with ECDGA exhibitors to raise their awareness of ECD.

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

The ECD Global Alliance Welcomes Chinese ECD Referral Care Center
Peking Union Medical College Hospital joins elite group of hospitals skilled in treating Erdheim-Chester disease patients.

Last updated: January 25, 2018

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