Welcome to the Noonan Syndrome Association website

Supporting people and families affected by Noonan Syndrome

What is Noonan Syndrome?

Noonan Syndrome is a complex clinical genetic disorder and is thought to affect approximately 1 in 2500 live births. It has many symptoms and their intensity can vary greatly from person to person....read more

What is the Noonan Syndrome Association?

The Noonan Syndrome Association (NSA) aims to provide comprehensive support for families and individuals affected by Noonan Syndrome through research, local and national events, a helpline, local support groups and raising awareness and understanding of the condition amongst the medical profession and general public....read more

NSA's Latest Newsletter is here....

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Nearly 150 NSA members and their families and guests filled the Pavilion Room at the Hilton Metropole Hotel on 12th April. We have reports from the event inside the newsletter which you can find above but feedback from families made the day not only the biggest but the most successful.




The Cognitive and Social Profiling: Exploring Rasopthies Project is looking at areas where children with NS (and other closely related conditions) may have difficulties, such as attention and concentration, learning skills, and socialising. The end result should help improve care and treatment in NS. Several NSA families are already involved – is this something you could help as well? Go here for more details: 


Elliot and several tokens of gratitude from NSA!

The 2nd NSA Families for Families Day was held on Saturday 23rd March at

The Hilton Metropole Hotel Birmingham NEC and despite the weather was another great success for those families who got through! Details of some of the talks and Q&A sessions will be posted soon - we promise - but here's a few pictures from the day