Erdheim-Chester Disease (ECD) Community

Meet, discuss & support other patients or families living with Erdheim-Chester Disease (ECD). Contribute to topics, or just share what's on your mind


I'm starting treatment on Zelbarof---could anybody in Canada who is currently on this drug or has been in the past please contact me as I have some questions.


Hi Kelly,

I looked at the Map in the Members section here and found some others from Canada:

What you want to do is visit each member's profile and send them a friend request if you have not already.

After they accept, we send you an email with a link to their profile page. Click to go to their profile and now you will see a CONTACT link where you can send them a private message to their email box.

Write us at or comment here if you have any troubles. I hope some others will come along and comment as well.


Hi Kelly,
There are other patients in Canada who are on a BRAF inhibitor. The ECD Global Alliance is happy to put you in contact with other patients. Please email Liz at
We wish you all the best,