What research and support is there for adults with Noonan’s syndrome?

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What research is going on for adults aged over 30 with Noonan Syndrome, and where can they get help and advice?

A study with a cohort of families started in 1985 and most of them are now young adults in their twenties. Hopefully the group can continue to be followed up so that we’ll really know what’s happening later in life. There was also a collaborative effort across Europe to try to understand the natural history of the cardiac complications of Noonan Syndrome. Also, clinically, there are a number of specialised centres for example cardiomyopathy expert centres in the UK, which have a lot of experience of looking after adults with Noonan Syndrome-related congenital heart disease. It is important to remember however that Noonan Syndrome was not progressive. There could be complications later in life but many people remain in good health with no further problems.

Question asked and answered at our family’s day 2015