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Because Brett's syndrome is so rare, there is very little information available in traditional medical journals or even on the internet. We rely mostly on the support of other families who have children diagnosed with the Chondrodysplasia Punctata Brachytelephalangic type. To date we have been able to find three other children with this same diagnosis. (Ranging from St. Louis to France to New Zealand!)

If you would like to contact us or these other families about Chondrodysplasia Punctata, please e-mail us at the following addresses:

Beth and Dave Gillum (son, Brett - 7 years old)
brettgillum@cox.net

Marina and Warren Jellyman (son, Anthony - 12 years old)
wjellyman@yahoo.com

Julia and Patrick Miller (son, Christian - 7 years old)
Pmil500000@aol.com

Marie and Joaquim Pinheiro (son, Thomas - 14 years old)
thomas_marie2000@yahoo.fr

For information about testing for Chondrodysplasia Punctata, you can contact:

Fiona M. Field, MS, CGS
Genetic Counselor
International Skeletal Dysplasia Registry
Cedars-Sinai Medical Center
Los Angeles, CA
fiona.field@cshs.org

David Rimoin, MD, PhD
International Skeletal Dysplasia Registry
Cedars-Sinai Medical Center
Los Angeles, CA
david.rimoin@cshs.org

Bill Wilcox, MD, PhD
International Skeletal Dysplasia Registry
Cedars-Sinai Medical Center
Los Angeles, CA
bill.wilcox@cshs.org