A rare primary bone dysplasia characterized by prenatal and postnatal growth retardation short stature cortical thickening and medullary stenosis of the long bones absent diploic space in the skull bones hypocalcemia due to the hypoparathyroidism small hands and feet delayed mental and motor development intellectual disability dental anomalies and dysmorphic features including prominent forehead small deep-set eyes beaked nose and micrognathia.
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 April 2026
Newly diagnosed with
Autosomal recessive Kenny-Caffey syndrome?
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Advocacy Organizations
HypoPARAthyroidism Association, Inc
We work to improve the lives of people impacted by hypoPARAthyroidism through education, support, research, and advocacy. We strive to be a reliable, dedicated, accessible, inclusive, empowering resource while being compassionate and professional.
The Chandler Project
The Chandler Project brings awareness and shines a light on transformative research surrounding achondroplasia and other skeletal dysplasias by offering support to a global community and network of patients, parents, and caregivers seeking information on scientific discoveries, pharmaceutical advancements and surgical treatment options.
Wave of Support, Inc
Empowering those affected by bleeding disorders and other rare disease through advocacy, resources, education, and support
accessia health
Accessia Health, a national charitable patient assistance organization, is dedicated to eliminating healthcare barriers for people with rare or chronic health conditions. Comprehensive services include personalized case management, financial assistance, education, and legal aid support. Our flexible funding model goes beyond copays, allowing individuals to pay for other essential medical expenses
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Clinical Trials
For a list of clinical trials in this disease area, please click here.