What is the prevalence of Adams-Oliver syndrome?

How many people does Adams-Oliver syndrome affect? Does it have the same prevalence in men and women? And in the different countries?


Adams-Oliver syndrome (AOS) is a rare genetic disorder characterized by the combination of scalp defects (such as missing skin, hair, or skull bones) and limb abnormalities (such as missing fingers or toes). The prevalence of AOS varies across different populations and geographical regions.



Although exact prevalence rates are challenging to determine due to the rarity of the condition, studies suggest that AOS affects approximately 1 in 225,000 to 250,000 live births worldwide. It is important to note that prevalence may differ among different ethnic groups and populations.



AOS is typically inherited in an autosomal dominant manner, meaning that an affected individual has a 50% chance of passing the condition on to each of their children. However, sporadic cases can also occur without a family history of the syndrome.



Diagnosis of AOS is often made based on clinical examination, medical history, and genetic testing. Management of the syndrome involves addressing the specific symptoms and associated complications through a multidisciplinary approach, including surgical interventions, physical therapy, and genetic counseling.



While Adams-Oliver syndrome is considered rare, it is crucial for healthcare professionals and families to be aware of its existence and seek appropriate medical care and support.


by Diseasemaps

It’s the same for men and women. 50% out of 2 kids with carrier.

8/16/19 by Amanda 3000

The prevalence is estimated to be 1 in 225,000 births (but this is only based on one study so may be higher). Regarding inheritance, there are some important points to note: - It doesn't matter how many children (or siblings) you have. The 50% (or 1 in 2) risk refers to the risk of every pregnancy. - The risk is calculated from the different possible combinations of egg and sperm, which is completely random. So if you carry a genetic variant in your family, each pregnancy will have the same risk (irrespective of how many affected children you already have). - It also depends on which gene is affected. Not all genes have a 50% risk - some have a 25% (or 1 in 4) risk. Please see my post in 'Is Adams-Oliver syndrome hereditary' for more information: https://www.diseasemaps.org/adams-oliver-syndrome/top-questions/hereditary/ Dr Laura Southgate (Genetics Researcher)

2/6/20 by Laura 650

It's very very rare. Please join Disease Maps so we can collate and share helpful information with researchers to advance knowledge

1/14/23 by Trudy, Steph's mum 2650

Top questions

What is the life expectancy of someone with Adams-Oliver syndrome?

Celebrities with Adams-Oliver syndrome

Is Adams-Oliver syndrome hereditary?

Is Adams-Oliver syndrome contagious?

Is there any natural treatment for Adams-Oliver syndrome?

View more questions of Adams-Oliver syndrome

World map of Adams-Oliver syndrome


Find people with Adams-Oliver syndrome through the map. Connect with them and share experiences. Join the Adams-Oliver syndrome community.

There are 28 people in the map. View Map of Adams-Oliver syndrome