About Us

The trusted Basal Cell Carcinoma Nevus Syndrome (BCCNS) Life Support Network is an unparalleled non-profit patient advocacy community dedicated to providing support services, counseling and health care advice to children, adolescents and adults diagnosed with the rare genetic condition known as BCCNS, also known as Gorlin-Goltz Syndrome. Our purpose is to unite affected individuals and families for moral support; partner with medical professionals familiar with the manifestations of the syndrome; advance critical research through member enrollment in clinical trials; create and expand investigations by administering surveys, developing registries and exploring natural histories; and raise awareness for BCCNS to ultimately expand our outreach and improve the quality of life of our members and their families.

 

We believe:

  • Knowledge will enable our members to make informed decisions about caring for their condition and improving their quality of life.
  • Greater awareness for BCCNS will save lives by promoting early diagnosis, reducing the number of invasive surgeries and rigorous treatments necessary to maintain the manifestations of the disorder.
  • Advancements in research will uncover new effective therapies to enhance the lives of those affected by this disabling and life-threatening chronic genetic condition, for which there are currently limited treatment options.