Resources- Specific Diagnosis Card Catalog- Jeune's Syndrome

Synonym: Asphyxiating Thoracic Dystrophy

Who to Contact

Jeune's Syndrome Info/Support Network
c/o Kurt Hernon
1400 S. Lakeview Blvd.
Lorain, Ohio 44052
(440) 246-1578
E-mail: kurage@adelphia.net
Web: www.geocities.com/HotSprings/

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 Information available about Jeune Syndrome is scarce and tends to be out of date.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.

Where to go to Chat with Others

We are unaware of any discussion forums specifically for this diagnosis. If you know of a discussion group for Jeune's please let us know.

Learn More About It

What is Jeune's Asphyxiating Thoracic Dystrophy?

Jeune's Syndrome Article
from OMIM

Links

Jeunes Syndrome Family Foundation

Jeune Syndrome Info/Support Network

Jeune's Syndrome Info Center