Connective tissue / elastin fiber disorders

(Marfan syndrome, pseudoxanthoma elasticum (PXE),cutis laxa, dwarfism, skeletal dysplasia, Ehlers Danlos syndrome, hyperextensible joints, Beals syndrome, congenital contractural arachnodactyly, other)

Coalition for Heritable Disorders of Connective Tissue

382 Main St

Port Washington, NY 11050

Phone: (800) 862-7326 or (516) 883-8712

Contact: Priscilla Ciccariello

Fax: (516) 883-8712

Also See:

• Cutis Laxa Internationale, 35 route des Chaignes, 17740 Sainte Marie de Ré, France, Phone: 33 (0)5 46 55 00 59, e-mail: mcjlboiteux@aol.com (english and french) Oct 2002
• Dwarfism / skeletal dysplasia
• Ectopia Lentis
  
• Ehlers Danlos Syndrome
• Hajdu Cheney
• Marfan Syndrome & Related Connective Tissue Conditions, Stanford Univ. Center, CA
• Marfan Syndrome
• Pseudoxanthoma elasticum (PXE)
• Shprintzen-Goldberg Syndrome
• Stickler Syndrome
• Supravalvular Aortic Stenosis
• Weill-Marchesani
• Williams Syndrome

• National organizations information on genetic conditions or birth defects
• Information for Siblings and Family Members

To locate a genetic counselor or clinical geneticist in your area:

• Professional Genetics Societies
• Genetic clinics, centers, departments

   

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Genetics Education Center
University of Kansas Medical Center © 1995-2009
Debra Collins, M.S. CGC, Genetic Counselor, dcollins@kumc.edu


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