ECD Global Alliance

The ECD Global Alliance is dedicated to awareness, support, education, and research related to Erdheim-Chester Disease. Towards this mission the organization will work with the global community to:

(1) Raise awareness of ECD. The purpose of this activity is to facilitate early diagnosis of the disease and to stimulate concern and efforts to increase knowledge regarding the disease and treatments.

(2) Provide support to those affected by the disease. The purpose of this activity is to lessen the burden as much as possible to those affected by ECD. This support will include, but not necessarily be limited to, providing information, referrals, and one-on-one contact with others affected by the disease.

(3) Advocate for and support research programs. The purpose of such research programs is to learn more about (a) the disease, (b) effective treatments for the disease, (c) possible cures, and/or (d) avenues to prevent the disease altogether. This will include, but not necessarily be limited to, collaborating with medical personnel, research personnel and other health organizations to help define areas where research is needed, to fund research, and to help promote the benefits of ECD research to other health agencies. The alliance will also serve as a conduit to transfer needed information from its members to the research community per documented guidelines.

(4) Share educational material and facilitate information sharing among interested parties regarding ECD. This will include providing current, reliable, and factual information related to ECD to patients, loved ones, medical personnel, research personnel, media, and other organizations. It will also include promoting, sponsoring and conducting workshops, symposiums and other meetings to promote the goals of the alliance.