Research Grants Awarded
The ECD Global Alliance has been funding Erdheim-Chester Disease research since it was first given a 501(c)3 status in 2010 (retroactive back to 2009). The organization has awarded six $50,000 research grants to study Erdheim-Chester Disease, as well as a $316,000 grant to establish an ECD Patient Registry.

Understanding dendritic cell lineages in Erdheim-Chester disease: towards a non-invasive diagnosis
ECD Global Alliance awards a $47,000 research grant to Laurent Arnaud and Julen Haroche from Hôpital Pitié-Salpêtrière in Paris, France.
The study aims to understand the pathogenic mechanisms ...

Understanding and targeting novel molecular alterations in Erdheim-Chester Disease without the BRAFV600E mutation
Drs. Filip Janku and Omar Abdel-Wahab were awarded a $50,000 grant to investigate molecular alterations in BRAF-negative Erdheim-Chester Disease patients. The international research project ...

Tailoring Treatment for Erdheim-Chester Disease
Marina Ferrarini and Lorenzo Dagna receive a $50,000 grant to investigate the cellular mechanisms of Erdheim-Chester Disease.
The research explores how malignant cells interact with neighboring ...

Survivorship and Symptom Burden in ECD
A multi-institutional international study investigates long-term health challenges in Erdheim-Chester Disease survivors, focusing on treatment-related symptoms and quality of life. Preliminary ...

Spatial understanding of Erdheim-Chester Disease origin and lesional microenvironment
Dr. Egle Kvedaraite from Karolinska University Hospital receives a $50,000 Early Career Investigator Award to study Erdheim-Chester Disease's cellular origins and microenvironment. The research ...

Somatic Genetic Alterations in the Pathogenesis and Therapy of Histiocytic Disorders
Memorial Sloan-Kettering Cancer Center receives a $50,000 grant to investigate genetic alterations in histiocytic disorders. The research led to a groundbreaking phase II study of vemurafenib, ...

Prognostic and Therapeutic Significance of Chromosome Region Maintenance 1 (CRM1) Protein in Erdheim Chester Disease
Dr. Jithma Abeykoon, Mayo Clinic hematologist, receives a $20,000 grant from Uplifting Athletes to study the CRM1 Protein in Erdheim Chester Disease.

Pathophysiology of Neurodegenerative Erdheim-Chester Disease and Langerhans Cell Histiocytosis
Dr. Nicole Coufal from the University of California, San Diego receives a $50,000 grant to investigate neurodegeneration in Erdheim-Chester Disease and Langerhans Cell Histiocytosis. The ...

Inferring the origin of Erdheim-Chester Disease from phylogenetic mapping
Researchers are pioneering a unique approach to understand Erdheim Chester Disease (ECD) through phylogenetic mapping of blood stem cell mutations. By reconstructing the genetic timeline of the ...

Hypoxia and inflammation in Erdheim-Chester disease microenvironment: insights on the pathogenesis and implications for therapy proposal
ECD Global Alliance awards a $49,745 research grant to Lorenzo Dagna at San Raffaele Scientific Institute in Milano, Italy. The study investigated the microenvironment of ECD lesions, revealing ...

Histiocytic Disorders Survivor Study (HDSS)
Dr. Gaurav Goyal, University of Alabama Birmingham's ECD Care Center lead, receives a $20,000 grant from Uplifting Athletes for the Histiocytic Disorders Survivor Study.
The research aims to ...

Exploring the genetic landscape of Erdheim-Chester disease by integrating GWAS and -omic data
Dr. Francesco Pegoraro from Meyer University Children's Hospital in Florence, Italy, receives a $50,000 ECD Global Alliance grant to explore the genetic landscape of Erdheim-Chester Disease. The ...

Design and Creation of a Global Registry Database for Erdheim-Chester Disease
Eli Diamond and Matthew Collin receive a $316,000 grant to develop a Global Registry Database for Erdheim-Chester Disease.
The comprehensive patient registry has expanded to include multiple ...

Defining the Cell-of-Origin of Erdheim-Chester Disease
Memorial Sloan-Kettering Cancer Center receives a $50,000 grant for Dr. Benjamin H. Durham's study on Erdheim-Chester Disease cell origins.
The comprehensive genomic research discovered ...

A New Comprehensive Approach to Predict Long-Term Prognosis in Erdheim-Chester Disease: From Cluster Analysis to Patient-Reported Outcomes
A comprehensive research study addresses the long-term impacts of Erdheim-Chester Disease, moving beyond survival rates to evaluate chronic disease-related consequences. The research aims to ...

A Clinical, Structural, and Functional Neuroimaging Study of Cognition in Erdheim-Chester Disease
Drs. Eli L. Diamond and Vaios Hatzoglou received a $43,000 grant to study cognitive effects in Erdheim-Chester Disease patients. The research revealed significant neurological impacts, including ...
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