The Internet was the turning point for us in our search for support and information.

We quickly discovered two support groups, The Noonan Syndrome Society (now the Birth Defects Foundation), and The Noonan Syndrome Support Group.  The Birth Defects Foundation is a UK support group which has a telephone helpline (08700 70 70 20) and has a very good booklet on Noonan Syndrome available.  They were the first contact I had with anyone who actually knew anything about Noonan Syndrome, and they sent me a great deal of useful information.  But the one thing I really wanted was contact with other families with Noonan Syndrome, and although the BDF arrange a very informative annual 'Information Day', they do not provide any means of contact with other families.

It was for this reason that I decided to join The Noonan Syndrome Support Groups 'listserv', which is an email contact group for affected families.

(To join, simply send a message to listserv@home.ease.lsoft.com with only the following command in the message body: subscribe noonan-syndrome)

TNSSG proved to be a lifesaver for me, as right away I had contact with dozens of other families who had children with NS, and the support and friendship I received were more help to me than anything or anyone had been so far!  There are now around 120 of us in regular contact, and there is always someone who has been through the same problems, and the feeling of being among friends, all of whom are 'experts' on NS, is a fantastic feeling!  Before I got involved with TNSSG I had managed to obtain plenty of information on NS, but felt incredibly lonely.  And another benefit of being involved with the group is that you tend to find out that certain aspects of NS that are troublesome to the children and their families are not necessarily mentioned in the literature, and indeed often not even recognised by the professionals to be a problem at all... for instance leg cramps, constipation, and difficulty getting the children to drink.

TNSSG is a wonderful friendly organisation and have a great deal of online information on Noonan Syndrome, so if you would like to find out more then take a look at TNSSG Web-Site or email their founder Wanda Robinson.

Here are a few links to sites which may be of interest:

The Noonan Syndrome Support Group      Birth Defects foundation

Danish Centre for Rare Diseases              Mette Baser's Site