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Children with Jeune’s Syndrome can have symptoms that develop as newborns or as late as 4 or 5 years of age. The following features are usually associated with the syndrome:
Jeune’s Syndrome Information Center at Columbus Children’s Hospital
Excellent website that provides general information about Jeune’s syndrome, patient stories, published articles, links to other support services, Q & A with specialists.
Jeune’s Syndrome Family Foundation
This website provides information about the syndrome, contact information for the organization, parent support networks, and links to other related sites. The organization also provides financial assistance to families who need to travel with their child for rib expansion surgeries.
Jeune’s Syndrome Information
Site contains general information, links to other websites, research projects, and support groups.
Magic Foundation for Children’s Growth
Information on the disease and support groups.