Yahoo Message Group
Because CSS/EGPA is such a rare disease, it is difficult to connect real time with others with the disease. The internet allows for patients from all over the world to send messages, and offer support and advice. Many of the members are very well educated in the disease and post interesting and up to date information.
One of the first such groups, founded in 2002, is the Churg Strauss Syndrome International Support Group. A Yahoo message group, it has over 850 members from around the world. To keep out spammers, one must apply for free membership.
Click here to join the group
In addition to the CSSISG, there are several Facebook groups with a focus on CSS.
Churg-Strauss Syndrome Community 69 likes
Churg-Strauss Syndrome Open Group 12 members
Churg Strauss Syndrome Association Open Group 334 members
Churg-Strauss Syndrome Support & Awareness Open Group 22 members
Churg-Strauss Syndrome Support & Information Community 36 likes
Churg-Strauss vasculitis Diseases Community Page 1
Churg–Strauss syndrome Diseases Community Page 97 likes
CSS Network (Churg Strauss Syndrome) Community 60 likes
Eosinophilic vasculitis Interest Community Page 2
Leukotriene receptor antagonist-associated Churg–Strauss syndrome
Syndrome de Churg&Strauss Community 10 likes