Natural History ECD Case Study Report Released
Dr. Estrada-Veras and cohorts provide a detailed report on the five year study conducted with 60 ECD patients. Thank you to all the patients who participated in the ECD Natural History Study to make it possible for the information in this article to be learned and reported. The involvement of these members has helped to expand the understanding of ECD. The ECD Global Alliance and the entire ECD community are very appreciative of your efforts. Read more.
The ECDGA Welcomes Vanderbilt University Medical Center to the ECD Referral Care Center Network
Nashville, TN is the newest location that Erdheim-Chester Disease patients can go to for treatment by ECD-knowledgeable doctors. Read more.
Recent Awareness Efforts
Awareness is so critical for the future of ECD patients and families. Thanks to the dedication of many community members, the progress continues with each and every project, here are a few recent activities.
First Chinese ECD Referral Care Center
The Peking Union Medical College Hospital in Beijing, China joined the ECD Referral Care Center network recently. Xin-Xin Cao, MD leads the ECD-knowledgeable team at this center, where as many as 30 patients have been seen. Find our more in the press release!
2017 ECD Patient & Family Gathering
The 5th Annual International ECD Patient & Family Gathering will bring together physicians, patients, and families to learn about various disease management topics and to experience fellowship with others that understand this rare disease. Please consider joining the ECD community this year in New York, NY on October 27, 2017. Find out more HERE.
Rare Disease Day is February 28, 2017
Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases. Join the ECD community on February 28, 2017 to raise your voice, spread awareness, and be a part of this annual event supporting rare diseases like Erdheim-Chester. Find out about this event and how you could get involved HERE.
Last updated: March 28, 2017