Phone: 440.834.0011
info@bccns.org
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About 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. BCCNS is a rare genetic condition, caused by a mutation on Chromosome 9, that affects the way the body grows. Individuals with BCCNS may develop multiple basal cell carcinomas (skin cancers), jaw cysts, pits on the palms and soles, cleft lip or palate, seizures, skeletal deformations, or various tumors.

 

Number of People Served

 

BCCNS provides support to more than 1200 families affected by BCCNS throughout the United States and in more than 20 countries around the globe.

 

Services Provided Include...

 

Family Support Network  - click to visit BCCNS Online Forums.

 

Informational Literature  and Video  - click "Informational Literature" to read educational documents, or "Video" to view a short film.

 

Quarterly newsletters  - click to view the archives of the Quarterly Advocate, BCCNS Life Support Network's newsletter.

 

National and Regional Family Conferences  - click to view the past and upcoming events sponsored by the organization.

 

Physician referrals  - click to find a physician who is familiar with this syndrome. You can search by location or specialty.

 

Facilitation of insurance appeals

 

Intervention for proper care of affected individuals

     

Sunshine Club  - creating expressions of care for family members before, during, and after surgery, as well as remembering birthdays, anniversaries, etc.

 

Global Network

 

Australian Gorlin Syndrome Mutual Support Group (AGSMSG)
vicnet.net.au/~gorlinsyndromesupport
annahickey43@gmail.com or pmemery@bigpond.com

BCCNS Life Support Network Canada
hedgehog.ca@gmail.com

Goltz e.V. (Germany)
www.shg-basaliome.de

Gorlin Syndrome Group (United Kingdom)
www.gorlingroup.org

Gorlin Syndrome Australia Blog
gorlinsyndromeaustralia.blogspot.com

Syndrome de Gorlin (France)
syndromegorlin.e-monsite.com/forum

 

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