The Benign Essential Blepharospasm Research Foundation has support groups throughout the U.S. and one in Canada. The Dystonia Medical Research Foundation has support groups throughout the U.S and Canada for persons with all types of dystonia - not just blepharospasm. The Benign Essential Blepharospasm Research Foundation was established by a Blepharospasm-Meige patient, Mattie Lou Koster. The Foundation was granted its charter in 1981. It also has a number of pamphlets and other informational material .
Research is funded and several workshops for researchers have been sponsored.
Annual international conferences are held with continuing education as a highlight. Both patients and the medical community participate in these conferences. Audio tapes are available from the 2000 conference which was held in Lexington, Kentucky. There is at least one Area Support Group in most states and one in Canada. A Medical Advisory Board provides advice on publications and reviews research grant applications.