Kniest, Spondylometaphyseal Dysplasia, Spondyloepimetaphyseal dysplasia and related conditions info and support group.
National Society of Genetic Counselors – Find a genetic counselors near you. A genetic counselor will help you decide which genetic tests are best for you. Bring a copy of this page to your visit to a genetic counselor. You can also find genetic counselors who specialize in certain conditions such as skeletal dysplasias.
http://www.ctgt.net/ is a laboratory dedictaed exclusively to the genetic analysis of disorders affecting the skeleton and connective tissues. “Accredited by the College of American Pathologists Connective Tissue Gene Tests (CTGT) is a laboratory dedicated exclusively to the molecular diagnosis of inherited disorders affecting connective tissue.” CTGC offers genetic tests for collagen disorders such as Kniest, spondyloepyphyseal dysplasia (SEDC), and spondyloepimetaphyseal dysplasia (SEMD, Stickler’s and more. New tests are added as the become available.
Genetests: is ‘a publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons.’ They offer information on the following KSG conditions:
Type II Collagenopathies Includes: Achondrogenesis Type 2, Kniest Dysplasia, Spondyloepiphyseal Dysplasia, Spondyloepiphyseal Dysplasia, Congenita, Stickler Syndrome Type I
A government site, http://clinicaltrials.gov/ct/gui/c/b , lists thousands of ongoing clinical trials. You can search by condition and find out which clinical trials are currently recruiting. Anyone with a chronic condition should know about this important site.