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Jeune's Syndrome Family Foundation
a/k/a: JSFF
Address
P.O.Box 261181
Highlands Ranch, CO 80163-1181
Phone
303-683-1508
Email Address
missyannbenson@qwest.net
Website
The Jeune's Syndrome Family Foundation provides information and support to families of children diagnosed with Jeune's syndrome. First described in 1955 by a French pediatrician, this is a rare genetic disorder characterized by dwarfism with short ribs, short limbs, and a long, narrow thorax with reduced lung capacity. Many of the affected children have died early in life, but in recent years, the titanium rib project has provided hope for many of these children. This project makes possible surgical rib expansion treatment. The foundation offers financial support for those needing to travel to obtain treatment for their children.
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