ECD Global Alliance


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The ECD Global Alliance funds research dedicated to learning more about Erdheim Chester Disease.  In addition, the organization works with research teams and patients to facilitate communication between the two groups.  The organization is interested in exploring the diagnosis, cause, treatments, and cure of Erdheim-Chester Disease. 

Anyone interested in doing ECD research is encouraged to contact the organization for more information at support@erdheim-chester.org.

Grants to be Awarded in 2015

The ECD Global Alliance will award at least one research grant, not to exceed a total of 100,000USD, in 2015.  The deadline for Letters of Intent (LOI) is April 2, 2015.  The LOI submission form can be found here.

Grants to be Awarded in 2014

The ECD Global Alliance is currently reviewing proposals for funding in 2014.  An announcement will be posted here when the final funding decision is made.


Grant Applications

Submitted Letters of Intent will be reviewed and the investigators for those projects that hold the most promise for making significant and lasting advances in the knowledge and treatment of ECD will be invited to submit a complete proposal.  Submitted proposals will be reviewed according to a set of requirements that can be found here.  The organization reserves the right to modify these guidelines, as it deems appropriate.  However, the guidelines are provided here to help researchers in their planning.  There are no plans in the near future to make any major modifications to these requirements, except to add in a step at the beginning of the process to request Letters of Intent to be submitted by interested parties prior to the ECD Global Alliance publishing a Request for Proposals.

Grant Review Process

The grant review process used by the ECD-GA is based on the process used by the National Institutes of Health.  It relies on a Grant Application Review (GAR) Committee with members who are qualified researchers.  Individuals of the committee first review each application independently.  The GAR Committee then comes together as a group to share comments and discuss each application submitted.  This committee provides the ECD Global Alliance Board of Directors a ranking order of the applications.  The Board of Directors then makes the final funding decision and notifies the applicants.  This process can be found here and the criteria by which applications are scored can be found here.

Previous Grants Awarded

The ECD Global Alliance has awarded three $50,000 research grants to study Erdheim-Chester Disease as follows:

2013 ECD-GA Grant Awarded to Omar Abdel-Wahab, MD

In September 2013, the ECD Global Alliance announced the 2013 ECD grant was awarded to Omar Abdel-Wahab, MD, David Hyman, MD, and Eli Diamond, MD from Memorial Sloan-Kettering Cancer Center in New York, New York for the study described as, "Somatic Genetic Alterations in the Pathogensis and Therapy of Histicytic Disorders".  As described in the MSKCC press release, the aim of this study is to:
       1.  Identify recurrent somatic genetic events in addition to BRAFV600E mutations in patients with ECD.
       2.  Identify cell of origin in ECD.
       3.  Identify the optimal targeted therapy in histiocytic disorder patients with mutations activating kinase signaling.

2012 ECD-GA Grant Awarded to Julien Haroche, MD, Phd

Proposals for the 2nd $50,000 research grant awarded by the ECD-GA were due December 31, 2011.  In April 2012, the organization announced the grant was awarded to Laurent Arnaud, MD, PhD and Julen Haroche, MD, PhD from SHôpital Pitié-Salpêtrière in Paris, France for the study described as, "Understanding dendritic cell lineages in Erdheim-Chester disease: towards a non-invasive diagnosis".  The aim of this study is to understand the primary mechanisms involved in the pathogenic differentiation of histiocytes in ECD, as well as to use these data to derive a screening & diagnostic test for ECD that would rely on blood sampling without the need for a biopsy.  It is expected the study will run from Janurary 2013 until January 2014.

2011 ECD-GA Grant Awarded to Lorenzo Dagna, MD.  Final report: "Hypoxia and inflammation in Erdheim-Chester disease microenvironment: insights on the pathogenesis and implications for therapy final report".

In April 2010, only one month after receiving a 501(c)(3) designation, the organization announced it would be awarding a $50,000 ECD research grant and put out a Request for Proposals (RFP) to the international medical research community.  In November 2010, the first grant recipient was chosen. 

The ECD Global Alliance 2010 grant was awarded to Lorenzo Dagna, MD at San Raffaele Scientific Institute in Milano, Italy for the study described as, "Hypoxia and inflammation in Erdheim-Chester disease microenvironment: insights on the pathogenesis and implications for therapy proposal".  The aim of this study was to better define the microenvironment inside ECD lesions and to evaluate the possibility of using specific drugs, already available for human usage, as a means to find new therapeutic options for the disease.  The study ran from January 2011 until June 2012.


For More Information, Contact:

Kathy Brewer, President

ECD Global Alliance

P.O. Box 775

DeRidder, LA  70634  USA




Last updated: January 12, 2015