Lethal Larsen-like syndrome
A rare developmental defect with connective tissue involvement characterized by multiple joint dislocations flattened facial appearance abnormal palmar creases laryngotracheomalacia and pulmonary hypoplasia. Additional signs may include a bifid tongue micrognathia non-immune hydrops fetalis and brain dysplasia. The disease is lethal shortly after birth due to respiratory insufficiency.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Reference: Access aggregated data from Orphanet at Orphadata.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http: //www.orphadata.org. Data version September 2023.
Newly diagnosed with
Lethal Larsen-like syndrome?
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Advocacy Organizations
Myhre Syndrome Foundation
Myhre Syndrome Foundation is a patient advocacy organization dedicated to providing hope and improving the lives of those impacted by Myhre syndrome.
The Chandler Project
The Chandler Project (TCP) provides those affected with achondroplasia, and other forms of skeletal dysplasia (dwarfism), with the latest in pharmaceutical research and surgical advancements.
Syndromes Without A Name (SWAN) Australia
Provide information, support and advocacy to families caring for a child with an undiagnosed or rare genetic condition.
Clinical Trials
For a list of clinical trials in this disease area, please click here.