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

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!

We'll be putting information about what was said on the day by our panel of experts over the next few weeks and going through the questions you asked. In fact you'll find the first one in our Publications and Information section (see top lefT)

Professor Patton leads the Medical Advisory Group in the Q&A session
2015-Families-for-Families-Day-programme[...]
Microsoft Word document [46.3 KB]
2015-Families-Day Registration.doc
Microsoft Word document [60.5 KB]

READ ALL ABOUT IT! NSA'S LATEST NEWSLETTER

DOWNLOAD IT HERE

Newsletter-issue-7.pdf
Adobe Acrobat document [1.4 MB]

MORE FAMILIES THAN EVER !  

 

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.

 

 

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!