Erdheim-Chester Disease Global Alliance

Press Releases

2023

Erdheim-Chester Disease Global Alliance Awards $50k Grant to Study ECD
A new study will help better understand disease-causing cells within ECD.

2022

ECDGA Applauds FDA Approval of Cobimetinib to Treat Erdheim-Chester Disease
Cobimetinib is an anti-cancer medication that was first approved for the treatment of melanomas.

First ECD Care Center Opens in Spain
Hospital Universitari de Bellvitge Becomes First ECD Global Alliance Referral Care Center in Spain!

Second ECD Center for Floridians
The ultra-rare cancer group welcomes the second center of care knowledgeable in treating ECD in the Florida region this year. We welcome the Moffitt Cancer Center in Tampa, FL to the network!

New ECD Care Center Welcomed in Gainesville Florida
The University of Florida Health joins the Erdheim-Chester Disease Global Alliance Referral Care Center network in Gainesville, Florida.

Uplifting Athletes Awards ECD Global Alliance Investigator Draft
A rare disease advocacy group was awarded an Erdheim-Chester Disease Research Grant to conduct a survivor study.

2021 ECD Research Grant Award Announcement
The Erdheim-Chester Disease Global Alliance awards Young Investigator Research Grant to an Italy doctor to explore the genetic landscape of ECD.

2021

2021 Erdheim-Chester Disease Virtual Medical Symposium
Tuesday, November 16, 2021: During this conference, medical professionals from around the world gathered to share scientific findings, patient outcomes, and case studies related to Erdheim-Chester Disease and other histiocytic disorders.

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

NCCN Guidelines for Histiocytosis Clarify Best Practices for Recently-Defined Cancers
New clinical practice guidelines from National Comprehensive Cancer Network focus on workup and management for three main adult histiocytic disorders.

A New Year, a New Care Center for Erdheim-Chester Patients in the Netherlands
Erasmus University Medical Center in Rotterdam joins a network of hospitals skilled in treating Erdheim-Chester disease patients.

Een nieuw jaar, een nieuw zorgcentrum voor Erdheim-Chester-patiënten in Nederland

2020

ECD Caregiver Study Open at Memorial Sloan Kettering
An observational study of informal caregivers (ICs) of patients with Erdheim-Chester Disease (ECD) and other histiocytic diseases is now recruiting. Caregivers of patients participating in the Registry for ECD Patients are specifically requested, if possible, and the study team can help facilitate registry enrollment.

San Diego Researcher Awarded 2019 ECDGA Research Grant
ECDGA awards a research grant to the University of California-San Diego to improve the understanding of ECD and LCH, in addition to generating hypotheses and models that will allow for novel drug screening standards.

University of Alabama at Birmingham Joins the ECD Care Center Network
The ECDGA welcomes the O’Neal Comprehensive Cancer Center at the University of Alabama at Birmingham (UAB) into the referral care center network that serves Erdheim-Chester disease patients worldwide.

2019

Drug Trial for Erdheim-Chester Disease Patients Now Recruiting
MD Anderson Cancer Center in Houston, Texas takes lead on Dabrafenib and Trametinib drug trial.

FDA Granted Breakthrough Designation
The US Food and Drug Administration has granted a Breakthrough Therapy Designation to cobimetinib in the treatment of patients with histiocytic neoplasms (Erdheim-Chester Disease, Rosai-Dorfman, Langerhans Histiocytosis), who do not bear the BRAF V600 mutation. This is not only a great step forward for BRAF-negative ECD patients but for all histiocytosis.

ECDGA Raises Awareness at Endocrinology Conference
Representatives from the ECDGA attended the Endocrinology Society’s annual conference in New Orleans to raise
awareness of ECD among attending endocrinology specialists.

2019 Rare Disease Day
Over the last 11 years, Rare Disease Day has become iconic as the global campaign for raising awareness of rare diseases among politicians, clinicians, researchers, and pharmaceutical companies. This year’s theme is a testament to the challenges patients and families suffering from a rare disease face.

7th Annual International Erdheim-Chester Disease Medical Symposium
The ECD Medical Symposium was hosted by Dr. Lorenzo Dagna at the IRCCS San Raffaele Scientific Institute, Vita-Salute San Raffaele University. The Milan, Italy event was held 10-11 July featuring scientific advances and collaboration from around the world as it relates to this rare disease. This was the ECDGA’s second event abroad.

2018

The Erdheim-Chester Disease Global Alliance Raises Awareness of ECD at Hematology Conference
Hematologists from around the world eagerly engage with ECDGA exhibitors to learn more about this rare disease.

July 2018 University of Miami Medical Education Grand Round
The University of Miami hosted a medical presentation to further residents’ education in histiocytic disorders. The speaker, ECD Care Center lead Dr. Ronald Go of Mayo Clinic in Rochester, MN, discussed the features and management of Erdheim-Chester disease and other histiocytoses. ECDGA member, Teresa Mesa, represented the organization during this educational meeting.

New California ECD Care Center at Stanford
The Erdheim-Chester Disease Global Alliance welcomes the Stanford Histiocytosis Program at Stanford Health Care as the newest ECD Emerging Care Center.

June 2018 Houston Methodist Medical Education Grand Round|
Medical residents and physicians at Houston Methodist Hospital in Houston, TX learned about Erdheim-Chester disease from ECD Care Center lead, Mark Heaney, MD, PhD from Columbia University Medical Center. Also in attendance was ECDGA President, Kathy Brewer.

ECD Patient Registry is Recruiting
The ECD Global Alliance announces the launch of the Registry for Patients with Erdheim-Chester Disease led by Memorial Sloan Kettering Cancer Center (MSK), in New York, NY. The next step in building the registry database includes recruiting patients with ECD to participate. The primary investigator, Eli L. Diamond, MD, will lead the research team at MSK to collect patient data in order to assist all interested stakeholders in treating patients battling this rare disease.

ECDGA Welcomes New ECD Care Center in North Carolina
The ECD Global Alliance welcomes Duke Cancer Institute in Durham, NC into the referral care center network that serves ECD patients worldwide. Richard F. Riedel, MD will be leading the institute’s team at the Emerging Referral Care Center.

New York Pathologist Awarded 2017 Grant by ECD Global Alliance
The ECD Global Alliance awards an 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 an 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 families 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 the 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 an elite group of hospitals skilled in treating Erdheim-Chester disease patients.

2016

DeRidder Non-Profit in Paris During ECD Awareness Week
The Erdheim-Chester Disease Global Alliance supports the rare disease by hosting events abroad.

Global nonprofit with local roots fight rare disease
The Erdheim-Chester Disease Global Alliance supports those affected by Erdheim-Chester Disease out of DeRidder, Louisiana

Erdheim-Chester Disease Declared a Histiocytic Neoplasm
The World Health Organization reclassifies the rare disease

The Erdheim-Chester Disease Global Alliance Welcomes Lebanese ECD Care Center
The American University of Beirut Medical Center joins the rapidly growing Erdheim-Chester Disease care system.

St. Louis on the Map for Rare Disease Care
Washington University in St. Louis joins the Erdheim-Chester Disease Care Center Network.

Western Louisiana Nonprofit Grows International Care Center Network
Washington University in St. Louis and The Cancer Institute of São Paulo – the University of São Paulo in Brazil provide Erdheim-Chester Disease patients with more care opportunities.

New Care Centers for Erdheim-Chester Disease Patients Support Patient Access
The Seattle Cancer Center Alliance and Toronto’s Mount Sinai Hospital join the ECD Care Center network.

Culver’s of Highland Supports Rare Disease Day
Local rare-disease patient organizes fundraiser to raise awareness of Erdheim-Chester Disease in Indiana.

Mayor Roberts proclaims Rare Disease Day in DeRidder
Erdheim-Chester Disease is one of 7,000 rare diseases supported by the local proclamation.

Governor Bel Edwards Proclaims Rare Disease Day in Louisiana
Erdheim-Chester Disease is one of 7,000 rare diseases supported by the Louisiana proclamation.

Italian Scientists Win Grant from Grassroots Louisiana Non-Profit
The ECD Global Alliance awards Erdheim-Chester Disease research grant for new treatment possibilities using the RCCS™ Bioreactor.

Global Excellence Awards Given for Rare Disease Advocacy
Exceptional contributors recognized at the Third Annual International Erdheim-Chester Disease Patient & Family Gathering.

2015

Small-Town Non-Profit Grants Big Funds for Leading Research
The Erdheim-Chester Disease Global Alliance awards two grants in 2015 for top ECD research projects from leading research institutions.

International Erdheim-Chester Disease Conference
TMC Houston News announces the 3rd Annual Symposium in their events section.

SOBI, Inc. Awards Erdheim-Chester Disease Non-Profit Grant for Care Center Creation
First of its kind – ECD Referral Care Centers were made possible in part by pharmaceutical funding.

Louisiana Governor proclaims annual Erdheim-Chester Disease awareness week
Louisiana is the ECDGA’s office location and the state has issued a Proclamation for its first-ever ECD Awareness Week.

“A Leap Forward in Rare Disease Treatment” Erdheim-Chester disease community collaborates to change the course of a disease
A film was created to increase awareness of ECD and provide hope to those fighting this disease. A special thanks to the video participants and Trovagene, Inc. for sponsoring the film.

Last updated: January 24, 2023