Survivorship and Symptom Burden in ECD
Gaurav Goyal (University of Alabama at Birmingham, Birmingham, AL US) The prognosis of ECD has improved tremendously due to the approval of targeted therapies. However, these treatments are administered for prolonged duration and can lead to side effects and...
A New Comprehensive Approach to Predict Long-Term Prognosis in Erdheim-Chester Disease: From Cluster Analysis to Patient-Reported Outcomes
Francesco Peyronel, MD (Meyer Children’s University Hospital – IRCCS, Firenze, Italy) Survival of patients affected by Erdheim-Chester disease (ECD) has substantially improved over the last decades, thanks to the increased awareness of the disease, the consequent...
Tailoring Treatment for Erdheim-Chester Disease
Marina Ferrarini, MD Lorenzo Dagna, MD Marina Ferrarini, MD, and Lorenzo Dagna, MD were awarded $50,000 for their project, “Tailoring Treatment for Erdheim-Chester Disease.” The Ferrarini and Dagna study focuses on understanding how malignant cells in ECD patients...
Design and Creation of a Global Registry Database for Erdheim-Chester Disease
Matthew Collin (Newcastle University, Newcastle upon Tyne, UK) Eli Diamond, MD (Memorial Sloan Kettering Cancer Center, New York, NY US) The 2014 grant was awarded to principal investigators Eli Diamond, MD from Memorial Sloan-Kettering Cancer Center in New York, and...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.