Supporting people and families affected by Noonan Syndrome

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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

 

 

FAMILIES for FAMILIES DAY

 

Saturday 25th April 2015

 

AT THE HILTON BIRMINGHAM METROPOLE HOTEL

NATIONAL EXHIBITION CENTRE, BIRMINGHAM B40 1PP

 

Following on from our most successful Families for Families Day yet last year, this year’s Families for Families Day programme is  packed with opportunities for families to learn about the latest developments, to talk to other families with similar experiences to your own, to renew friendships and make new ones – and to enjoy the day.

 

Heart from the experts about the latest medical research and treatment, the latest on the changes in Special Educational Needs and how they affect your family, NSA's new fundraising strategy and our new social media presence. There will be professional care for the younger children and separate activities for 11 to 25 year olds who will have a room to themselves.Click on the link below to download the programme

 

Last year we had a record attendance, so don’t delay – complete the registration form below then either email it to info@noonansyndrome.org.uk or post to:        NSA

12 Talbot Close

Shifnal

Shropshire TF11 8SG

 

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!