Supporting people and families affected by Noonan Syndrome

WELCOME TO OUR WEBSITE

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

2016 FAMILIES for FAMILIES DAY - BOOK YOUR PLACE NOW!

We are now taking registrations for our Families for Families Day. This year it will be on Saturday 23rd April and will be at our usual venue of the Hilton Birmingham Metropole Hotel at the NEC near Birmingham. For those thinking of coming to the Day for the first time, the venue is easily accessible by road, train, bus and air.

 

We have another great programme this year and we’ve listened to what you said  about how we can make the Day even better and we’ve assembled our most impressive line up to date of leading medical experts whom you can ask just about every question about Noonan Syndrome. There will also be more break out opportunities for our younger delegates.

 

We have a lot of space but it’s not unlimited so please book your place now using the registration form below – our first deadline for registrations is Friday 10th March.

 

2016 FAMILIES FOR FAMILIES DAY - 23rd APRIL

Registration Form-2016.doc
Microsoft Word document [64.5 KB]

HELP US REACH OUR NEXT RESEARCH FUNDING TARGET!

We are now raising funds to support our next medical research project which will look at “The Neurological Aspects of NS including Epilepsy”. We have a target of raising £20,000 and we already have £9,100 towards this. Can you help? If you would like to donate, please press the button below and let's get the temperature up on the thermometer!

Thank you.

OR GIVE REGULARLY EACH MONTH!

Giving just a few pounds each month can make a big difference to the work of the hcarity and what it can achieve. Why not join the many members already donating each month? Just open the Standing Order form below, print and complete it and post it to us.

Standing-Order-Form.pdf
Adobe Acrobat document [108.6 KB]

2015 FAMILIES FOR FAMILIES DAY

CHEERS! OWAIN AND MATTHEW ENJOY THEIR SQUASH AT THE FAMILIES DAY

IT WAS THE BIGGEST AND THE BEST FAMILIES DAY

- and that's not just us saying that

 

Fantastic, informative, friendly, superb are just some of the things people said on the day. And they came up with lots of ideas for next year already!

See what our panel of experts said in our Newsletter or in the Publications and Information section (see top lefT) where you can also find out how you can get involved in the Lymphoedema Research we are supporting.

Professor Patton leads the Medical Advisory Group in the Q&A session

READ ALL ABOUT IT! NSA'S LATEST NEWSLETTER

Newsletter-8Ax.pdf
Adobe Acrobat document [9.3 MB]

DOWNLOAD IT HERE

CASPER - CAN YOU HELP?

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: 

 http://www.bbmh.manchester.ac.uk/casper/

Elliot and several tokens of gratitude from NSA!