The Benign Essential Blepharospasm Research Foundation (BEBRF) is a nonprofit organization whose mission is to bring attention to BEB and to help search for a cure. It provides tremendous patient value with a quarterly newsletter, the organization of local support groups throughout the United States and the world, hosting of educational seminars, and funding of medical research. The organization is also a member of the Dystonia Advocacy Network and the Dystonia Coalition, collaborations of researchers and advocacy groups with the aim of advancing the pace of dystonia research.
The organization was instrumental in advocating for the initial approval of botulinum toxin as a treatment for BEB. Their newsletter and local support groups provide patients with information about the condition, various treatments, as well as crucial emotional support for patients and families. The organization also helps advocate for patients with insurance companies and healthcare providers. All patients with BEB can benefit from a referral to the BEBRF.
Curr Opin Ophthalmol. 2018;29(5):440-444. © 2018 Lippincott Williams & Wilkins