Prognostic and Therapeutic Significance of Chromosome Region Maintenance 1 (CRM1) Protein in Erdheim Chester Disease
Jithma Abeykoon Dr. Jithma Abeykoon is the Senior Associate Consultant, Assistant Professor in Hematology and Medical Oncology, and Clinician Investigator in Hematology and Medical Oncology at the Mayo Clinic in Rochester, MN. In collaboration with Uplifting Athletes,...
Histiocytic Disorders Survivor Study (HDSS)
Dr. Gaurav Goyal, MD Dr. Gaurav Goyal is an Assistant Professor of Hematology-Oncology and ECD Care Center lead physician at the University of Alabama Birmingham. In collaboration with Uplifting Athletes, Dr. Goyal has been awarded a $20,000 grant for a Histiocytic...
A Clinical, Structural, and Functional Neuroimaging Study of Cognition in Erdheim-Chester Disease
Eli Diamond, MD Vaios Hatzoglou, MD Eli L. Diamond, MD, and Vaios Hatzoglou, MD were awarded a $43,000 grant for their project, “A Clinical, Structural, and Functional Neuroimaging Study of Cognition in Erdheim-Chester Disease.” The purpose of this study is to...
Understanding and targeting novel molecular alterations in Erdheim-Chester Disease without the BRAFV600E mutation
Filip Janku, MD, Ph.D. Omar Abdel-Wahab, MD Filip Janku, MD, Ph.D., and Omar Abdel-Wahab, MD were awarded a $50,000 grant for their project, “Understanding and targeting novel molecular alterations in Erdheim-Chester Disease without the BRAFV600E mutation.” This...
Defining the Cell-of-Origin of Erdheim-Chester Disease
Benjamin H. Durham, MD (Memorial Sloan Kettering Cancer Center, New York, NY US) Memorial Sloan-Kettering Cancer Center in New York received a $50,000 research grant. Principal investigator, Benjamin H. Durham, MD, leads the study Defining the Cell-of-Origin of...General Announcements
2018 Patient and Family Gathering
The 6th Annual International ECD Patient Gathering will be held in Orlando, Florida on November 15 – 16, 2018. Medical professionals will share the latest findings related to ECD and offer information and tips to optimize patient care. All ECD patients and caregivers are encouraged to attend. Registration is now open!
Accomplishments, Blog Announcements
2018 Patient and Family Gathering
The 6th Annual International ECD Patient Gathering will be held in Orlando, Florida on November 15 – 16, 2018. Medical professionals will share the latest findings related to ECD and offer information and tips to optimize patient care. All ECD patients and caregivers are encouraged to attend. Registration is now open!
Board/Staff Announcements
Volunteer Appreciation
In addition to the dedicated Board of Directors, the ECD community is grateful for the work of volunteers that support the ECDGA on projects that maintain the mission to serve those affected by ECD across the globe!
Care Monitoring Announcements
A Leap Forward in Rare Disease Treatment
This video was produced to provide patients with hope and information. Featured in the short film are knowledgeable ECD physicians, ECD patients, and a family member. They demonstrate that targeted therapies are resulting in dramatic improvements in patient outcomes, bringing real hope for the future of patients affected by ECD.
Funding, Grant Announcements
2018 ECD Medical Symposium
The 6th Annual International ECD Medical Symposium will be held in Orlando, Florida on November 14 - 15, 2018. Medical professionals will share the latest research findings related to ECD, discuss the care of patients, and develop collaborations to further research. All medical professionals with interest in ECD and ECD patients are encouraged to register.
Host Fundraisers Announcements
ECD Awareness Week
The 3rd Annual ECD Awareness Week is September 10-15! Bringing awareness of this rare disease is crucial. You can make a global impact this ECD Awareness Week by spreading awareness and garnering support for Erdheim-Chester Disease families around the world.
Newsletters Announcements
ECD Patient Registry is Recruiting!
The ECD Patient Registry is a medical database collecting information and/or samples from patients diagnosed with ECD. This data will be used to help scientists advance our knowledge of ECD and its treatment. Read about the registry and sign-up below.
Past Awards Announcements
2018 ECD Medical Symposium
The 6th Annual International ECD Medical Symposium will be held in Orlando, Florida on November 14 - 15, 2018. Medical professionals will share the latest research findings related to ECD, discuss the care of patients, and develop collaborations to further research. All medical professionals with interest in ECD and ECD patients are encouraged to register.
Social Connections Announcements
Tell Your Story
Help others that are battling ECD to not feel alone. Share your journey and raise awareness! We encourage you to submit a story to The Mighty and make your voice heard.
Studies/Trials Announcements
ECD Patient Registry is Recruiting!
The ECD Patient Registry is a medical database collecting information and/or samples from patients diagnosed with ECD. This data will be used to help scientists advance our knowledge of ECD and its treatment. Read about the registry and sign-up below.
Treatments Announcements
ECD Trials Open
Follow the link below for "Clinical Trials for ECD Treatment" to learn more about the current trials accepting ECD patients.