Abstract Basal Cell Carcinoma Nevus Syndrome (BCCNS) Life Support Network set out on its journey in 2000 and have since provided support to over 1200 families, stimulated new drug development, and connected with diverse medical specialties – including dermatology, plastic surgery, genetics, cardiology, radiology, oral surgery and dentistry – to increase medical professionals' awareness of the needs of the BCCNS patient community. The organization's success means a better future for everyone vulnerable to this potentially disabling and life-threatening disease. While BCCNS affects a small portion of the American public (1 in 19,000 or about 16,500 American adults and children annually), the disease comes with significant cost and burdens. As there is no cure and few effective treatments, people suffering with this disease face a lifetime challenge in managing the disease. The numerous skin cancers and jaw cysts_the most common symptoms of the disease_generally require numerous surgeries throughout one's life. In addition, patients' experiences are afflicted by brain tumors, cognitive delays, physical disabilities including auditory, vision and speech impairments. Early diagnosis is important in order for children with BCCNS to survive life-threatening brain tumors and to overcome potential future disability. The financial burden for all patients is significant. A major hurdle in coping with BCCNS is finding a doctor knowledgeable about the disorder. Securing a prompt diagnosis and appropriate treatment is complicated by the fact that the disease affects so many different parts of the body, thereby crossing over diverse medical specialties. Working with inadequate knowledge, caregivers may use inappropriate therapies which can cause deformities and increased morbidity and mortality. Common treatments, such as radiation and x-rays, can result in the formation of thousands of basal cell carcinomas (BCCs or skin cancers), which are particularly perilous for undiagnosed children exhibiting brain tumors. To minimize the occurrence of death, widespread networking and education is essential. This is the cornerstone of the organization as it is only through communicating directly with individuals that advocates are made aware of new practices and current concerns. BCCNS is able to connect members with medical professionals in their region, or offer advice on preventative screenings, and serve as a knowledgeable resource. As the only national organization in the United States serving BCCNS patients, the organization has extensive experience in providing educational support to patients and doctors, national credibility and recognition among patients and stakeholders, and well-established communication links with many medical specialties. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 102nd Annual Meeting of the American Association for Cancer Research; 2011 Apr 2-6; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2011;71(8 Suppl):Abstract nr LB-82. doi:10.1158/1538-7445.AM2011-LB-82