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.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...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...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...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.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.