On February 28th, the National Institutes of Health (NIH)’s National Center for Advancing Translational Sciences (NCATS) will co-sponsor this year’s Rare Disease Day event at the NIH Clinical Center. This event aims to raise awareness about rare diseases, the people they affect, and NIH research collaborations that address scientific challenges and advance research for new treatments. This is a free event that is open to the public, including patients, patient advocates, health care providers, researchers, trainees, students, industry representatives, and government staff. This year’s event will be both virtual and in person at the Natcher Conference Center in Bethesda, MD....
Since 1981, Benign Essential Blepharospasm Research Foundation has invested donations to provide blepharospasm patients, patients with related disorders, and caregivers free support resources and educational programming, as well as the critical funding of research in the pursuit of the cause, treatments, and cure for blepharospasm. The BEBRF is a federally recognized 501(c)(3)organization dedicated to advancing our mission through careful and responsible stewardship of our donor contributions. As a designated 501(c)(3) organization, all donations are tax-deductible and gratefully appreciated. Transparency Our commitment to transparency is another way that we try to demonstrate our worthiness of your trust. We maintain a level...
Start a Support Group We need Support Group Leaders! Many patients have volunteered to be Support Group leaders. The BEBRF office provides help to train you, schedule any meetings and coordinates the invitations for patients in your area. We are happy to answer any questions you may have. Please share your experience and help a fellow patient! Please contact us if you can help us be a leader: bebrf@blepharospasm.org Get involved in a Clinical Trial On occasion, the Foundation will be asked to help with clinical trials that require blepharospasm patients’ participation. In those instances, the Foundation will publicize the...