Skip to content
knowrare
HealthSignal
Your condition community

Living with Hallermann-Streiff syndrome

A rare condition with an unusual skull shape, distinct facial features, thin skin and hair, and eye and dental differences.

Get Signals Ask Anything

Understanding Hallermann-Streiff syndrome

Hallermann-Streiff syndrome (HSS) is a rare condition with an unusually shaped skull, distinct facial features, and eye and dental differences.

Other features include thin skin and hair, poor vision, a small upper airway, and short stature. Most people have normal intelligence. It is diagnosed by physical exam. It is noticed during pregnancy, at birth, or in infancy.

Signs & symptoms

Symptoms vary from person to person. GARD lists these among the most common:

  • Unusual skull shape
  • Eye differences, such as small eyes or cataracts at birth
  • Teeth differences, including teeth present at birth
  • Thin skin and hair
  • Beaked nose
  • Wide-set eyes

Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.

Diagnosis

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include bone and joint specialists, brain and nervous system specialists, eye disease specialists and genetic specialists.

  3. Consider genetic testing

    Changes in CHD6 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.

  4. Connect with expert centers

    Little People of America and National Foundation for Ectodermal Dysplasias may keep lists of experts for this condition.

Care & treatment

Care team
Bone and joint specialists (orthopedists or orthopedic surgeons); Brain and nervous system specialists (neurologists); Eye disease specialists (ophthalmologists); Genetic specialists (geneticists)
Expert care
Expert lists: Little People of America, National Foundation for Ectodermal Dysplasias
Treatment
GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
Research
Clinical trials and observational studies may be options. See the research section below.

General information, not medical advice. Your care team makes the decisions.

Everyday life

Living with a rare condition is easier with support.

  • Connect with Little People of America and other patient organizations
  • Keep notes on symptoms, changes and questions for appointments
  • Ask about patient registries that help research
  • Look into financial aid and travel resources for care visits
Bring these questions to your next doctor visit
Which eye specialist should check for cataracts and vision problems?
How should the airway and breathing be monitored?
What dental care is recommended?

Quick facts

Symptoms usually startduring Pregnancy, at Birth, and as an Infant
GenesCHD6

GARD says the cause is unknown and thought to be a random genetic change. It lists the CHD6 gene. It is not thought to be inherited in families.

GeneticNeurologicalSkin

Also known as: franc'ois dyscephalic syndrome; francois dyscephalic syndrome; françois dyscephalic syndrome; hallerman - streiff syndrome; hallermann syndrome; hallermann's syndrome

Patient organizations

Source: NIH GARD · Hallermann-Streiff syndromeGARD ID 288 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

You are more than your diagnosis

Perspectives from people navigating life with Hallermann-Streiff syndrome.

Explore the Hallermann-Streiff syndrome blog
Broader resource

9 Things to Know After Diagnosis

Read article
Broader resource

The Invisible Job: What Caregiving for a Rare Disease Really Looks Like

Read article
Broader resource

Embrace the Ask: How to Seek The Support You Need

Read article
Your experience could help someone else.

Share your story with our editorial team.

Share your story You choose what to share.

Explore research for Hallermann-Streiff syndrome

Explore actively recruiting Hallermann-Streiff syndrome studies with HealthSpark.

HealthSpark

Find actively recruiting studies for Hallermann-Streiff syndrome with HealthSpark. Share your city to explore research near you.

  • Recruiting studies from ClinicalTrials.gov
  • Share your city to look for research near you
  • Eligibility is confirmed by the study team

Powered by HealthSpark, our AI chat helper

I can help you find recruiting Hallermann-Streiff syndrome studies. Enter a ZIP code, address or city below and I'll look within 50 miles.

Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

Get Signals for Hallermann-Streiff syndrome

Stay in the loop with community stories and updates from medical researchers.

HealthStoryfor Hallermann-Streiff syndrome

Create a living journal that talks back

HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Hallermann-Streiff syndrome experiences more deeply and prepare for better conversations with your doctors and care team.

Start your journal

Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.