Noonan Syndrome Awareness Association

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THE MOST COMMON RARE DISEASE

In Australia & the World

There may be as many as 20,000 people with Noonan Syndrome in Australia but 50% of these people are undiagnosed or misdiagnosed. The NSAA works with health and medical education services to reduce this rate of misdiagnosis.
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Heart Health

80% of people with Noonan Syndrome have heart abnormalities. They require care and support.
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Did you know?

The average age of diagnosis for Noonan Syndrome is 8 years old. This means many children miss out on early intervention. The NSAA works to improve early diagnosis and access to services
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Support

Helping people with Noonan Syndrome and their families identify, access and fund support services.
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Educate

The NSAA provides resources to assist health professionals and families caring for individuals with Noonan Syndrome.
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Help us raise to rise!

Join us in raising funds so we can all help
more people rise above the challenges
of living with Noonan Syndrome

What is Noonan Syndrome?

Noonan syndrome (NS) is a genetic condition that affects many areas of the body that occurs in between 1 in 1000 to 1 in 2500 individuals. NS is characterized by mildly unusual facial features, short stature, heart defects, bleeding problems, skeletal malformations, and many other signs and symptoms.

Noonan syndrome is one of a group of related conditions, collectively known as RASopathies. These conditions all have similar signs and symptoms and are caused by changes in the same cell signaling pathway.

There is no cure.

Please click here for a video on RASopathies

Hear their stories

Noonan Syndrome is genetic disease with diverse manifestations and presentations.

We invite you to meet the families and individuals dealing with Noonan Syndrome and hear their unique and moving stories.

Research

Events

Support