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I am writing to tell you about a clinical research study for people 18 years of age and older with Gorlin syndrome. I thought you may be interested in checking it out. Here is a link to the site:

I hope you find this information helpful.


Facing the facts about Gorlin syndrome.

To help increase awareness of Gorlin syndrome, we encourage you to share these stats with your friends and family.

Gorlin syndrome is also known as BCNS, Gorlin-Goltz syndrome, and NBCCS
People with Gorlin syndrome often have unique physical features that can include: Large head size, Cleft palate, Wide-set eyes, Protruding jaw
Gorlin syndrome affects an estimated 1 in 31,000 people
More than 1,000,000 new cases of basal cell carcinoma are diagnosed each year in the US, but less than 1% of these are related to Gorlin syndrome
Gorlin syndrome is caused by mutations in the PTCH1 gene and is inherited as an autosomal-dominant trait
Basal cell carcinomas usually develop between 12 and 35 years of age