About the BCCNS Life Support Network
Basal Cell Carcinoma Nevus Syndrome (BCCNS) Life Support Network is the only organization
in North America dedicated to supporting families with BCCNS. Founded in Ohio in February of 2000,
the Network now serves as an international resource for affected individuals, their families, the
medical community, and the general public.
The mission of the BCCNS Life Support Network is to ...
- Focus on the early diagnosis and treatment of children evidencing an initial onset of BCCNS;
- Develop information about the medical conditions and disorders experienced by those living with BCCNS;
- Share this information with clinics and healthcare providers treating BCCNS patients, and other
similarly affected populations;
- Engage affected individuals and their families, caregivers, colleagues, and schools in creative learning
opportunities to effect an optimum quality of life and attain maximum personal potentials through informed communication;
- Strengthen the capacity of patients and their families to manage their disease; and
- Establish and foster a network of medical professionals actively engaged in advancing the welfare of the
BCCNS patient community.
Services We Provide
The Network provides support to more than 1200 families affected by BCCNS throughout
the United States and in more than 20 countries around the globe. These services include the following:
- Patient Support Forum: Our online forum gives affected members a place to
listen and be heard, share stories and advice, and connect with others who are affected by BCCNS.
- National and Regional Conferences: We sponsor various events and
get-togethers that provide members with an opportunity to meet other affected people face-to-face.
- The Quarterly Advocate: Our quarterly newsletter keeps Network
members and supporters up to date on the Network's latest activities and accomplishments. We welcome and
encourage member submissions for publication.
- Educational Media: The Network's collection of journal articles, helpful
tip sheets, and PowerPoint presentations is available both online and on complimentary CDs. We also have DVD
copies of “Bitter Inheritance” - the BBC documentary about BCCNS patient Jim Costello.
- The Sunshine Club: A Network service that sends greeting cards to
members for birthdays, holidays, surgeries, and other occasions.
- Medical Assistance: Interventions for proper care of individuals, facilitation of insurance appeals,
and a physician referral directory
searchable by state or specialty.
Many of the photos on our website were provided by Rick Guidotti of Positive