Welcome to the Noonan Syndrome Association website

Supporting people and families affected by Noonan Syndrome

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

 

A FAMILY SUPPORT DAY & ANNUAL GENERAL MEETING

 

10.00am to 4.00pm SATURDAY 12th APRIL 2014

 

THE HILTON BIRMINGHAM METROPOLE HOTEL

NATIONAL EXHIBITION CENTRE, BIRMINGHAM B40 1PP

 

Programme

 

10.00  Annual General Meeting of the NSA charity

 

This is a short formal meeting, which all members can attend, at which the various positions on the charity are confirmed for the coming year.

 

10.20  Getting to Know You – My Story 

 

A chance for you to hear the story of one family’s experience of Noonan Syndrome followed by refreshments and an opportunity to get to know each other or renew acquaintances

 

10.50 Chairman’s Welcome, Introduction and Priorities for 2104

 

            Ian Legg sums up the last 12 months for the charity and looks ahead

 

11.00  Unravelling Mysteries of Noonan Syndrome - Meet The Experts 

 

Hear from leading medical figures including Professor Michael Patton, Dr Bronwyn Kerr and Paediatric Cardiologist Dr Juan Pablo Kaskiabout the latest developments in research and treatment for Noonan Syndrome followed by your chance to ask them your questions.

           

            Lunch - an informal buffet giving you more opportunities to talk to the experts and other families – and to sign up for NSA Planned Giving Scheme

 

14.00  Behaviour & Social Development

 

We hand over to the University of Manchester’s Institute of Brain, Behaviour & Mental Health for a session on learning and behaviour associated with NS:

 

Dr Shruti Garg will talk about cognitive, social and behavioural aspects of NS and researchers Amy Burns and Ami Brooks will explain about the CASPER research project which aims to improve the understanding some of the behavioural and developmental disorders of NS which you can be part of!

 

15.00 Choosing Schools: What Should Parents Look For?

 

Sue Miller from the Parent Partnership Service will discuss what parents need to look at when they are choosing a school for their children with NS.

 

Refreshments will be available from 14.45

 

15.30 Going Forward - Supporting NSA

 

            Ian Legg sums up the day and looks to the future

 

 

Day Closes by 16.00


FAMILIES FOR FAMILIES DAY - REGISTRATION FORM

2014-Families-Day Registration-web.doc
Microsoft Word document [58.5 KB]

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!

The 2nd NSA Families for Families Day was held on Saturday 23rd March at

The Hilton Metropole Hotel Birmingham NEC and despite the weather was another great success for those families who got through! Details of some of the talks and Q&A sessions will be posted soon - we promise - but here's a few pictures from the day