Mission: Educate - Advocate - Research We support, educate and empower the Behcet's community, while continuously advocating for better research, diagnostics, treatment and a cure.
Target demographics: Support - Educate - Advocate - Research to assist and empower the Behcet's community
Direct beneficiaries per year: Hundreds of newly diagnosed patients by providing literature and information. We advocated toward better access to medical care and helped push the 21st Century Cures Act through the House of Representatives.
I suffer from Behcets Disease. I was first diagnosed almost 19 years ago. This is an orphan disease. Less than 20,000 Americans have this disease. Most doctors don't even know about it, and I lived in NYC! This organization practically saved my life. They helped me with information, doctors, medications, support groups... I just can't say enough good things about them! I have watched them grow over the last two decades. Their members go to international conferences and bring back information from all over the world to help Americans. The organization is mostly volunteer run.