Noonan Syndrome Association

Find out more

Charity details

Registered address
PO Box 479,
Shifnal,Shropshire
TF2 2GJ

Phone

Email us

Visit our website

Charity number
1140671

Homepage

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:

Start fundraising Make a donation Make a monthly donation Donate your stuff