Tuesday, November 16, 2021 Join the experts during this scientific meeting to learn and share findings for histiocytosis. The 2021 Erdheim-Chester Disease Virtual Medical Symposium will be held online from 9:00 am to 2:15 pm CT (UTC -5) on Tuesday, November 16, 2021. During this conference, medical professionals from around the world will gather to share […]
A rare community will join together to connect & learn. Finally, the Erdheim-Chester Disease (ECD) community of patients, loved ones, and physicians will gather together again! During the challenges of the pandemic, serving our members remained the top priority. Through regularly scheduled chat sessions, education webinars, and a commitment to support, ECDGA has been able […]
You can play a big part in fighting ECD. If you are a patient or direct caregiver, please participate in this survey by October 30, 2021. Take the Survey When the ECD Global Alliance (ECDGA) was formed research was needed to help improve the diagnosis and treatment of Erdheim-Chester Disease (ECD). Little was known about […]
An international histiocytosis virtual meeting was held this September during Histiocytosis Awareness Month of 2021. The webinar was organized and hosted by the OR Association of Spain, with the audience consisting of mostly physicians and a smaller number of patients. One session during the conference included the ECD Global Alliance (ECDGA) and Histiocytosis Association (HA) […]
Erdheim-Chester Disease Awareness Week September 13 – 18, 2021 #SharingIsKey #ECDawareness #AwarenessWeek The ECD Global Alliance is hosting its 7th Annual Erdheim-Chester Disease Awareness Week! Join our community in raising awareness of the ultra-rare ECD now through September 18, 2021. Please consider helping our team share information about Erdheim-Chester Disease with others. The […]
The Erdheim-Chester Disease Global Alliance is proud to announce the first ECD Referral Care Center to be located in Michigan Erdheim-Chester Disease Global Alliance (ECDGA) is pleased to introduce the newest addition to the ECD Referral Care Center network, University of Michigan Rogel Cancer Center, Ann Arbor, Michigan. The lead physician at this center is […]
National Comprehensive Cancer Network (NCCN) Guidelines for Histiocytosis Published March 2021 The ECDGA is pleased to announce that the National Comprehensive Cancer Network® (NCCN®)—an alliance of leading cancer centers—has published a new NCCN Guidelines® for Histiocytosis. These clinical practice guidelines provide the latest evidence and expert-consensus for diagnosing and treating the three most common forms […]
Erasmus University Medical Center in Rotterdam joins the ECD Referral Care Center network of hospitals skilled in treating Erdheim-Chester disease patients. The Erdheim-Chester Disease (ECD) Global Alliance welcomes Erasmus University Medical Center in Rotterdam, Netherlands into its Referral Care Center Network to help Erdheim-Chester disease patients. Leading this ECD-knowledgeable team is Dr. Jan Am van […]
A new year, new programs, and renewed HOPE are on the horizon for the ECD community! The ECD Global Alliance is reaching new levels of support for those fighting Erdheim-Chester Disease with a matching gift campaign running from December 1 to December 31, 2020! Thanks to an $80,000 matching gift from a group of generous […]
You are likely already a member of the ECD Global Alliance and we hope that you have been able to find help and comfort in the resources that we have available to our members. It is our amazing team of volunteers, donors, medical professionals, and staff who make it all possible. This week the ECDGA […]
Last updated: November 10, 2021
rare connect
