Jeune's Syndrome Information/Support Network
Last Update: 2-22-2001
Jeune's Syndrome is an autosomal recessive genetic disorder of the thoracic bone structure. Major features include a small thoracic cage, shortened bones of the arms and legs, and renal dysfunction.
SYNONYMS: Asphyxiating Thoracic Dysplasia, ATD, Asphyxiating Thoracic
Dystrophy, Thoracic-Pelvic-Phalangeal Dystrophy
The Jeune Syndrome Info/Support Network provides information and support for families, medical professionals or anyone with an interest in Jeune Syndrome. Our current membership includes approximately 80 families representing nearly 95 people affected with Jeune's Syndrome. The ages of the members affected range from newborn to 25 years old. The range of this syndrome is vast. Members of our network have experienced a wide spectrum of related medical symptoms: from those who have exhibited none of the related medical problems to those who have had chest expansion surgeries, kidney transplants, liver dysfunction and a variety of other concerns.
The mission of our network is linking families to share common
medical experiences, information about the syndrome and to offer suport. Information
available about Jeune Syndrome is scarce and tends to be out of date.
We feel our best resources are families living with Jeune's. We offer an
information network designed to bring families with similar medical concerns together.
We encourage ANYONE with an interest in Jeune Syndrome to feel free to contact us. Also feel free to check out, or recommend additions to our LINKS page.
Address
Jeune's Syndrome Information/Support Network
1400 S. Lakeview Blvd.
Lorain, Ohio 44052
Telephone 440-246-1578
E- mail/ General Information: kurage@adelphia.net
Webmaster: kurage@adelphia.net