Basal Cell Carcinoma Nevus Syndrome Life Support Network

Our Purpose:

To provide health care, counseling, and support services to children and adults manifesting the inherited genetic disorder most commonly known as Basal Cell Carcinoma Nevus Syndrome (BCCNS), with particular focus on early diagnosis and treatment for children evidencing the initial onset of BCCNS.

To develop information about the medical conditions and disorders experienced by those living with BCCNS; to share this information with clinics and health care providers treating patients with BCCNS and other similar disorders; and to undertake a collaborative approach to the diagnosis, treatment, prevention, and cure of the disorders encompassed by BCCNS.

To provide a supportive environment for families to seek treatment for their children and other family members, and to train physicians, nurses, and other healthcare providers to communicate more effectively with BCCNS patients and their families, as well as other similarly affected populations.

We Will Provide:

Individual and group support and counseling designed to assist families in coping with BCCNS.

Opportunities to meet, communicate, and network with similarly situated children and their families at Network-sponsored events, including multimedia presentations and other means of communication.

Referrals to specialists and/or healthcare facilities most able to diagnose and treat effectively the disorders and diseases encompassed by BCCNS.

Education, resources and research
about the genetic disorder known as
BCCNS, and similar or allied disorders.