For more information on the BCCNS patient registry, please email an inquiry to firstname.lastname@example.org or feel free to call the office, (440) 834-0011, and we will be happy to help you find what you’re looking for.
Mission & History
To promote universal access to the most effective and
appropriate treatments for individuals with Basal Cell
Carcinoma Nevus Syndrome and to advance research
into new treatments and, ultimately, a cure for BCCNS.
How is Basal Cell Carcinoma Nevus Syndrome diagnosed?
A BCCNS diagnosis can often be made after exams of
several parts of the body by doctors experienced with
the manifestations of the disorder.
What is BCCNS?
Basal Cell Carcinoma Nevus (aka Gorlin or Gorlin – Goltz) Syndrome is a rare disorder that can affect many organ systems in the human body. This syndrome is caused by a genetic mutation that can be inherited or appear on its own. The incidence is low, in that approximately 1 in 27,000 people have BCCNS.
Affected individuals can have a wide variety of manifestations, the most common being basal cell carcinoma (BCC). Other expressions include jaw cysts (keratocystic odontogenic tumors (KCOTS)), pits of the palms and soles, enlarged skulls and prominent foreheads, benign skin cysts, calcifications in the midline of the brain, rib abnormalities, and spina bifida of the thoracic and cervical spine. Additional problems that may occur include ovarian cysts, hydrocephalus, boney abnormalities of the hands and feet. There are several less common issues associated with BCCNS that affect a smaller population in our community.