The ECD Global Alliance has partnered with lead physician Dr. Xinxin Cao of Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College (CAMS&PUMC) to host the webinar Understanding My Rare Disease with Dr. Cao.

On September 29, 2022, the initiative brought over 65 families from the China region together to hear from the expert on topics related to Erdheim-Chester Disease.

Dr. Cao joined the ECD Care Center Referral Network in 2016 with 20 ECD patients in her care and 30 patients being treated at the PUMC institution. Now, just six years later, with the help of awareness and referrals within the network, over 100 patients diagnosed with ECD are seen at this location.

Over the 13 years of dedicated service to the community, the ECD Global Alliance is working toward more global projects each year. Having only a dozen patients from this region registered with the organization, it was evident the communication gap was wide and would only close with an important initiative such as this educational webinar.

“Bringing patients together to learn about ECD is not only important for them to better understand the disease and treatment options,” said Dr. Cao. “But also, to see that they’re part of a community that supports and understands what each other are going through. I’m proud to be a part of the ECD Global Alliance and support its mission.”

Dr. Long Chang, a colleague at PUMC, assisted in the meeting to help with any translations needed from the Alliance and to inform the attendees about the mission of the organization.

These life-changing missions are only possible when doctors and volunteers come together with compassion and dedication. Thank you to all that participated!