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
Support us
If you'd like to support Noonan Syndrome Association just click the links below:
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