Overview
Hallermann-Streiff-like syndrome is an extremely rare genetic condition that shares many features with classic Hallermann-Streiff syndrome but may have distinct underlying causes or slightly different presentations. The condition primarily affects the face, eyes, skin, hair, and bones. People with this syndrome typically have a characteristic facial appearance that may include a small jaw (micrognathia), a beaked or thin nose, and a small mouth. Eye problems are common and can include cataracts present at birth, small eyes (microphthalmia), and other vision difficulties. The skull may have an unusual shape, and the skin can appear thin or aged-looking, with sparse hair on the scalp, eyebrows, and eyelashes. Dental abnormalities such as extra teeth at birth (natal teeth), missing teeth, or malformed teeth are also frequently seen. Short stature and proportionate dwarfism may occur. Some individuals may have mild to moderate intellectual disability, though many have normal intelligence. There is currently no cure for this condition, and treatment focuses on managing individual symptoms. This may include eye surgery for cataracts, dental care, nutritional support if feeding difficulties are present, and monitoring of growth and development. A team of specialists is usually needed to provide comprehensive care throughout life.
Also known as:
Key symptoms:
Small jaw and receding chinThin or beaked noseCataracts present at birthSmall eyesThin or aged-looking skinSparse hair on the scalp, eyebrows, and eyelashesShort statureDental abnormalities including teeth present at birthUnusual skull shapeSmall mouthFeeding difficulties in infancyBreathing difficulties due to small airwayVision problemsPossible mild intellectual disabilityFragile bones
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for Hallermann-Streiff-like syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Hallermann-Streiff-like syndrome at this time.
New trials open frequently. Follow this disease to get notified.
Specialists
View all specialists →No specialists are currently listed for Hallermann-Streiff-like 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 Hallermann-Streiff-like syndrome.
Community
No community posts yet. Be the first to share your experience with Hallermann-Streiff-like syndrome.
Start the conversation →Latest news about Hallermann-Streiff-like syndrome
No recent news articles for Hallermann-Streiff-like syndrome.
Follow this condition to be notified when news becomes available.
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 specific features does my child have that led to this diagnosis, and how is it different from classic Hallermann-Streiff syndrome?,Should we pursue genetic testing, and what type of testing do you recommend?,When should cataract surgery be performed, and what are the expected outcomes?,Are there any airway concerns we should be monitoring at home?,What specialists should be part of our care team, and how often should we see them?,Are there any clinical trials or research studies we could participate in?,What developmental milestones should we watch for, and when should we seek early intervention?
Common questions about Hallermann-Streiff-like syndrome
What is Hallermann-Streiff-like syndrome?
Hallermann-Streiff-like syndrome is an extremely rare genetic condition that shares many features with classic Hallermann-Streiff syndrome but may have distinct underlying causes or slightly different presentations. The condition primarily affects the face, eyes, skin, hair, and bones. People with this syndrome typically have a characteristic facial appearance that may include a small jaw (micrognathia), a beaked or thin nose, and a small mouth. Eye problems are common and can include cataracts present at birth, small eyes (microphthalmia), and other vision difficulties. The skull may have an
At what age does Hallermann-Streiff-like syndrome typically begin?
Typical onset of Hallermann-Streiff-like syndrome is neonatal. Age of onset can vary across affected individuals.