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
? And 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
? Our members: hundreds of families from all over the UK who are affected by Noonan Syndrome
? 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
? Our community: active social media groups and networks
What are our aims?
? supporting families
? initiating and supporting research
? spreading knowledge and information
Just some of the things we?re 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
To find out more, visit our website at: www.noonansyndrome.org.uk or join in on our Facebook page or email us at firstname.lastname@example.org or write to us at PO Box 479, SHIFNAL TF2 2GJ