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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?

Prevalence of Adams-Oliver syndrome
3 answers
It’s the same for men and women. 50% out of 2 kids with carrier.

Posted Aug 16, 2019 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)

Posted Feb 6, 2020 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

Posted Jan 14, 2023 by Trudy, Steph's mum 2650

Prevalence of Adams-Oliver syndrome

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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.

Stories of Adams-Oliver syndrome

ADAMS-OLIVER SYNDROME STORIES
Adams-Oliver syndrome stories
Luke Robet Cinciala was diagnosed with Adams Oliver Syndrome March 2017. He was born November 2 2016 at 37 weeks gestation. He was born at 3lbs 14 inches. He was in the NICU for 19 days just to grow. He never needed oxygen or anything to help him thr...
Adams-Oliver syndrome stories
My Daughter Zoey was born in November of 2015. When she was born it was noticed she had an unusual and large mark on the top of her head. It ran down the centre and looked almost as if it were a blister that had popped. Summerside is a very small com...
Adams-Oliver syndrome stories
I did not know I had Adams Oliver until my daughter was diagnosed first then genetics diagnosed me. My daughter Catherine was born with cutis aplasia, lesion on her abdomen, missing distal digits of 2, 3, 4, 5 in her right hand. She was totally contr...
Adams-Oliver syndrome stories
My name is Angelina and I have a beautiful little boy who was born with Adams Oliver Syndrome. Where do I I begin with our story! I’m 2013 I found out I was expecting my first child. When I was 18 weeks pregnant I went in for a normal doctors appoi...
Adams-Oliver syndrome stories
My daughter was born with AOS in 2010. She was born with aplasia cutis congenita on her head and shortened toes on one foot, also webbed. She had constipation issues and absence seizures that she was being medicated for, that she hasn't had for about...

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Adams-Oliver syndrome forum

ADAMS-OLIVER SYNDROME FORUM
Adams-Oliver syndrome forum
Yes, I am currently conducting a study to identify the genetic causes of Adams-Oliver syndrome. Our group and others have so far identified 6 genes that cause AOS, but we have a lot more work to do!   For more information on the latest dev...

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