Detection of an NRAS mutation in Erdheim-Chester disease
Eli L. Diamond, Omar Abdel-Wahab, Elena Pentsova, Laetitia Borsu, April Chiu, Julie Teruya-Feldstein, David M. Hyman, and Marc Rosenblum Blood: 122 (6); 2013 Aug 8Erdheim-Chester Disease With Cardiovascular Involvement and BRAF V600E Mutation
Kenichi Okamura, Yoshihiro Suematsu, Sei Morizumi, Mitsuhiro Kawata, Yuichi Dai, Mitsunori Yamakawa, Minoru Ono Circulation Journal Vol. 80 (2016) No. 7 1657-1659; June 24, 2016Erdheim-Chester Disease with Emperipolesis: A Unique Case Involving the Heart
Pengcheng Zhu, Naping Li, Lu Yu, Mariajose Navia Miranda, Guoping Wang, Yaqi Duan doi:10.4143/crt.2016.078; Published online: 28 July 2016Diffuse reduction of cerebral grey matter volumes in Erdheim-Chester disease
Eli L. Diamond, Vaios Hatzoglou, Sneha Patel, Omar Abdel-Wahab, Raajit Rampal, David M. Hyman, Andrei I. Holodny and Ashish Raj Orphanet Journal of Rare Diseases 2016 11:109; Published 2 August 2016Unusual presentation of Erdheim-Chester disease in a child with acute lymphoblastic leukemia
Archana George Vallonthaiel, Asit Ranjan Mridha, Shivanand Gamanagatti, Manisha Jana, Mehar Chand Sharma, Shah Alam Khan, and Sameer Bakhshi World J Radiol. 2016 Aug 28; 8(8): 757–763. Published online 2016 Aug 28. doi: 10.4329/wjr.v8.i8.757 PMCID:...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.