Learning anything new is often challenging, and this is especially true when you are trying to learn about a complex genetic condition such as Basal Cell Carcinoma Nevus Syndrome. The words and concepts may be unfamiliar and the details can be confusing. It can be difficult to know what to do with all the information you gather.
We’re here to help and show you that you are not alone. We offer several resources for you and your loved ones about BCCNS, as well as special programs and activities for children and teens. Our goal is to help you learn what you need to know quickly to manage the condition and support you through this new diagnosis.
- answer your questions by phone or email; Our office is open Monday-Friday 8:30 AM to 4:30 PM ET. Email us at firstname.lastname@example.org or give us a call at (440) 834-0011.
- help you find a physician or specialist and to navigate the process of filing with your insurance company
- offer fact sheets about various aspects of BCCNS and its manifestations in addition to offering management protocol guides
- stay connected with members and their families providing emotional support before, during and after surgeries as well as during holidays and birthdays.
- publish our Quarterly Advocate newsletter to keep members updated with the latest information on BCCNS management, invitations to our community events, and member stories of struggle and triumph
- offer phone and online support groups for families coping with the syndrome and related manifestations
In addition, our regional member retreats bring together members of the Network during the year to learn about the latest research, get questions answered by the leading experts, and form new friendships. The BCCNS Life Support Network Facebook page and our online community offer an opportunity to connect with others affected by these conditions 365 days per year.
We hope you will take advantage of all we have to offer so that you will feel better educated, better supported, and that you are not alone.