Overview
Al-Gazali-Dattani syndrome is an extremely rare genetic condition that affects multiple body systems, most notably the brain, pituitary gland, and spine. The syndrome was first described by doctors Lihadh Al-Gazali and Mehul Dattani, and it is sometimes referred to by their names. Children born with this condition typically have problems with the development of the pituitary gland, which is a small but important gland at the base of the brain that controls many hormones in the body. When the pituitary gland does not form properly, it can lead to a shortage of important hormones that control growth, metabolism, and other body functions. Affected individuals may also have abnormalities of the spine and spinal cord, brain malformations (such as holoprosencephaly or other midline brain defects), and intellectual disability. Some patients may have facial features that look different from typical, including closely spaced eyes or other midline facial differences. Because this syndrome is so rare, the treatment approach is mainly supportive and focuses on replacing missing hormones and managing individual symptoms. A team of specialists is usually needed to provide the best care. There is currently no cure, and research into this condition is still in its early stages.
Key symptoms:
Pituitary gland underdevelopment or absenceGrowth hormone deficiency leading to short statureLow levels of multiple pituitary hormones (hypopituitarism)Brain malformations such as holoprosencephalySpinal abnormalities (vertebral defects)Intellectual disability or developmental delayClosely spaced eyes or other midline facial differencesSeizuresLow thyroid hormone levelsLow cortisol levels (adrenal insufficiency)Delayed puberty or absent pubertyFeeding difficulties in infancyLow blood sugar episodes in newborns
Autosomal recessive
Passed on when both parents carry the same gene change; often skips generations
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Al-Gazali-Dattani syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Al-Gazali-Dattani syndrome at this time.
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Specialists
View all specialists →No specialists are currently listed for Al-Gazali-Dattani syndrome.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Al-Gazali-Dattani syndrome.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What hormones is my child missing, and what replacement medications will be needed?,How do I handle a sick day or emergency with regard to cortisol replacement (stress dosing)?,What brain and spine abnormalities were found on imaging, and what do they mean for my child's development?,What therapies (physical, occupational, speech) should we start, and how often?,How often will my child need blood tests and imaging follow-ups?,Are there genetic implications for future pregnancies in our family?,What signs of an emergency should I watch for at home?
Common questions about Al-Gazali-Dattani syndrome
What is Al-Gazali-Dattani syndrome?
Al-Gazali-Dattani syndrome is an extremely rare genetic condition that affects multiple body systems, most notably the brain, pituitary gland, and spine. The syndrome was first described by doctors Lihadh Al-Gazali and Mehul Dattani, and it is sometimes referred to by their names. Children born with this condition typically have problems with the development of the pituitary gland, which is a small but important gland at the base of the brain that controls many hormones in the body. When the pituitary gland does not form properly, it can lead to a shortage of important hormones that control gr
How is Al-Gazali-Dattani syndrome inherited?
Al-Gazali-Dattani syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Al-Gazali-Dattani syndrome typically begin?
Typical onset of Al-Gazali-Dattani syndrome is neonatal. Age of onset can vary across affected individuals.