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Erdheim-Chester Disease Global Alliance
A Nonprofit 501(c)(3) Organization
P.O. Box 775, DeRidder, LA 70634

"Supporting Those Affected by Erdheim-Chester Disease"
The ECD Global Alliance Welcomes  Chinese ECD Referral Care Center
Peking Union Medical College Hospital joins elite group of hospitals skilled in treating Erdheim-Chester disease patients.
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Xin-xin Cao, MD of Peking Union College Hospital in Beijing, China
DeRidder, LA, - January 30, 2017 - The Erdheim-Chester Disease (ECD) Global Alliance welcomes Peking Union Medical College Hospital in Beijing, China into its Referral Care Center network to help Erdheim-Chester disease patients.

Xin-xin Cao, MD leads the ECD-knowledgeable team at the first Referral Care Center in China. Cao, together with the group of specialists at Peking Union Medical College Hospital, has seen as many as 30 patients fighting the rare blood cancer.

"To be included in the Referral Care network means a lot to me and to my team. It means we are not fighting the disease by ourselves. We have a family. It is important to ECD patients, since the disease is so rare. The patients will feel more confident to see so many people working together and trying to cure the disease."  Dr. Cao explains why becoming an ECD Care Center is important for ECD patients in China.

ECD is a challenging illness that requires physicians across specialties to diagnose and treat patients. The potentially deadly sickness can affect the brain, bones, lungs, heart, and kidneys in dissimilar ways from patient to patient. Referral care centers provide the most up-to-date treatment available from doctors acutely interested in helping ECD sufferers.

I n 2015, Cao and team pathologist, Jian Sun's peer-reviewed article, " Evaluation of Clinicopathologic Characteristics and the BRAF V600E Mutation in Erdheim-Chester Disease Among Chinese Adults " was published in Blood Journal. The paper discusses a study including patients seen at the new care center in understanding the disease and its treatment.

The volunteer-based ECD Global Alliance has facilitated the ECD Referral Care Center network since 2015. Including the Chinese hospital, there are now 24 centers.

Notable institutes within the group include Memorial Sloan-Kettering Cancer Center in New York, NY, The University of Texas, MD Anderson Cancer Center in Houston, and The Mayo Clinic in Rochester, MN.

Learn more about the ECD Referral Care Center network at www.erdheim-chester.org/care-centers .
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Rare Disease Day Official Video 2017
February 28, 2017 is Rare Disease Day across the globe!
Learn how to spread #ECDAwareness this Rare Disease Day.

Rare Disease Day is an annual global event to raise awareness among the general public and decision-makers about rare diseases and their impact on peoples' lives.
 
This year, the National Organization for Rare Disorders, has a new countdown calendar to help you get engaged, a social media profile filter to show your support, and many other resources and ways to get involved. Check out our ECD-specific resources here. 
Rare Webinars brought to you by Global Genes
RARE Webinar: Health Insurance 101 hosted by Global Genes
Wednesday, February 1, 2017 at 10:00AM PST

Anyone can tell you that navigating insurance is no easy task. Whether you have no medical needs or have an abundance - learning definitions, healthcare plans, and the appeal process call for a basic guide. Find your go to guide on Global Gene's webinar where you will get to hear from experts in insurance and learn how to read an insurance plan, navigate the insurance system, and get the benefits you need to manage your rare disease.  Register Now!

If you are unable to attend the live webinar, still register so you can receive a link to the recorded content.
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"AWaRDS" Study Examines Services for Adults with Rare Disorders

NORD is partnering with researchers at Oregon State University to conduct the first large-scale study of information and psychosocial support needs of people living with rare disorders. The purpose is to assess the needs and find similarities and differences across the spectrum of disorders. An online survey is now open for adults living with rare diseases. Participants may benefit from communicating their experiences.  Learn more about it here.
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