Noonan Syndrome Association

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What is Noonan Syndrome?

Noonan Syndrome is a complex genetic disorder affecting around 1 in 2000 live births in the UK and is the most common of a number of related conditions known as the Rasopathies.

What is it like to have Noonan Syndrome?

There’s a wide range of symptoms which can vary greatly from person to person, from birth into adulthood but the main features can include:

- Heart abnormalities

- Feeding problems from birth

- A distinctive “Noonan” facial look

- Speech & hearing problems

- Delayed development and behavioural problems in childhood

- Epilepsy

- Continuing issues into adulthood including joint pain, heart problems, lymphoedema and epilepsy

What is the Noonan Syndrome Association?

The Noonan Syndrome Association is a registered charity dedicated to helping everyone affected by Noonan Syndrome and related conditions on the Ras/MAPK Pathway.

Who's involved?

- Our community of members: hundreds of individuals and families affected by Noonan Syndrome from all over the UK 

- Our Medical Advisory Group: leading medical experts in genetics and the symptoms of Noonan Syndrome

- Our Trustees: a group of dedicated volunteers who run the charity with help from a part time charity manager

What are our aims?

- supporting families

- initiating and supporting research

- spreading knowledge and information

What sort of things are we doing?

- Bringing people from across the UK together with a team of medical and educational experts at an annual Families Day

- Funding and participating in research into symptoms such as lymphoedema

- Providing social media and online platforms to provide information and networking for families

- Fundraising, including successful national funding bids and locally by members organising events