Overview
NEVADA syndrome is an extremely rare genetic condition. The name NEVADA stands for Neonatal Erosive and Vesicular Dermatosis with Absent or delayed skin barrier recovery. This condition primarily affects the skin and is present from birth. Babies born with NEVADA syndrome have widespread skin blistering, erosions (areas where the top layer of skin is missing), and fragile skin that does not heal properly. The skin barrier, which normally protects the body from infection and water loss, is severely impaired. Because the skin cannot function as a proper barrier, affected newborns are at high risk for infections, fluid loss, and problems regulating body temperature. The condition can be life-threatening in the newborn period due to these complications. NEVADA syndrome falls under the broader category of skin disorders classified under ICD-10 code Q84.8, which covers other specified congenital malformations of the skin. Treatment is mainly supportive and focuses on protecting the skin, preventing infections, managing fluid balance, and providing wound care. There is currently no cure for NEVADA syndrome. Because it is so rare, much of the medical understanding comes from a very small number of reported cases, and research is still ongoing to better understand the underlying genetic cause and develop more targeted treatments.
Key symptoms:
Widespread skin blistering at birthSkin erosions (raw, open areas of skin)Fragile skin that tears easilyDelayed or absent skin healingRedness and inflammation of the skinFluid loss through damaged skinDifficulty regulating body temperatureIncreased risk of skin infectionsNail abnormalitiesFailure to thrive or poor weight gain
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 NEVADA syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for NEVADA syndrome at this time.
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Specialists
View all specialists →No specialists are currently listed for NEVADA 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 NEVADA 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 is the specific genetic cause of my child's condition, and is genetic testing available?,What is the expected course of this disease for my child?,What wound care routine do you recommend, and what products should we use?,What signs of infection or complications should we watch for at home?,Are there any clinical trials or research studies we could participate in?,Should other family members be tested for carrier status?,What support services are available for our family?
Common questions about NEVADA syndrome
What is NEVADA syndrome?
NEVADA syndrome is an extremely rare genetic condition. The name NEVADA stands for Neonatal Erosive and Vesicular Dermatosis with Absent or delayed skin barrier recovery. This condition primarily affects the skin and is present from birth. Babies born with NEVADA syndrome have widespread skin blistering, erosions (areas where the top layer of skin is missing), and fragile skin that does not heal properly. The skin barrier, which normally protects the body from infection and water loss, is severely impaired. Because the skin cannot function as a proper barrier, affected newborns are at high ri
How is NEVADA syndrome inherited?
NEVADA syndrome follows a autosomal recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does NEVADA syndrome typically begin?
Typical onset of NEVADA syndrome is neonatal. Age of onset can vary across affected individuals.