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What is the prevalence of Coffin Siris Syndrome?

How many people does Coffin Siris Syndrome affect? Does it have the same prevalence in men and women? And in the different countries?

Prevalence of Coffin Siris Syndrome

Coffin Siris Syndrome is a rare genetic disorder characterized by developmental delays, intellectual disability, distinctive facial features, and other physical abnormalities. It is estimated to affect approximately 1 in 50,000 to 100,000 individuals worldwide. The prevalence of this syndrome may vary across different populations and regions. Diagnosis is typically made through clinical evaluation and genetic testing. Early intervention and supportive care can help manage the symptoms and improve the quality of life for individuals with Coffin Siris Syndrome.



Coffin Siris Syndrome (CSS) is a rare genetic disorder characterized by developmental delays, intellectual disability, distinctive facial features, and various physical abnormalities. The prevalence of CSS is relatively low, making it a rare condition. However, exact prevalence rates are challenging to determine due to the limited number of reported cases and the wide spectrum of symptoms.



Research suggests that CSS affects approximately 1 in 50,000 to 100,000 individuals worldwide. It is important to note that this estimate may not fully capture the true prevalence, as milder cases or individuals with atypical features may go undiagnosed or misdiagnosed. CSS can affect individuals of any gender, ethnicity, or geographical location.



Diagnosis of CSS is typically based on clinical evaluation, genetic testing, and the presence of characteristic features. Early intervention and ongoing support are crucial for individuals with CSS to optimize their development and quality of life.



While CSS is a rare condition, raising awareness among healthcare professionals and the general public is essential for early identification, appropriate management, and support for affected individuals and their families.


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Prevalence of Coffin Siris Syndrome

Coffin Siris Syndrome life expectancy

What is the life expectancy of someone with Coffin Siris Syndrome?

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Celebrities with Coffin Siris Syndrome

Celebrities with Coffin Siris Syndrome

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Is Coffin Siris Syndrome hereditary?

Is Coffin Siris Syndrome hereditary?

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Is Coffin Siris Syndrome contagious?

Is Coffin Siris Syndrome contagious?

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Natural treatment of Coffin Siris Syndrome

Is there any natural treatment for Coffin Siris Syndrome?

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ICD9 and ICD10 codes of Coffin Siris Syndrome

ICD10 code of Coffin Siris Syndrome and ICD9 code

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Living with Coffin Siris Syndrome

Living with Coffin Siris Syndrome. How to live with Coffin Siris Syndrome?

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Coffin Siris Syndrome diet

Coffin Siris Syndrome diet. Is there a diet which improves the quality of l...

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World map of Coffin Siris Syndrome

Find people with Coffin Siris Syndrome through the map. Connect with them and share experiences. Join the Coffin Siris Syndrome community.

Stories of Coffin Siris Syndrome

COFFIN SIRIS SYNDROME STORIES
Coffin Siris Syndrome stories
My 6 year old son has just been diagnosed with Coffin Sirus syndrome after a looooong journey of getting to the bottom of his diagnosis. Finally we have an answer. I am his mother.
Coffin Siris Syndrome stories
Declan was diagnosed with CSS in 2018. He also has a diagnosis of ADHD. Early in his life we were told that he may never walk/talk or be independent. He is now (nearly) 10. He goes to a regular school in a special needs class but also spends a lot o...
Coffin Siris Syndrome stories
My name is Naomi, I am 20 years old and I have coffin-siris syndrome. My affected gene is smarca4 but there are 10 known genes that can be affected to cause css. I am part of a Facebook group with over 1000 members so please come find us for help and...
Coffin Siris Syndrome stories
Leo our son who is 2 years old got his diagnosis at the beginning of August 2019. He has arid 1b coffin Siris
Coffin Siris Syndrome stories
Alice was always a little slower at developing, mainly with speech. After a genetic test the results were given Dec 2019. She mainly suffers from non-verbal, she is now 6.5yrs (Jan 2021) and although she is very expensive and makes similar sounds t...

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