As genetic research moves on and genetic testing becomes ever more precise, some families have discovered that they may be affected by related conditions in the RASopathies “family” rather than Noonan Syndrome in its strictest definition. These include Noonan Syndrome with Multiple Lentigenes (NSML) sometimes known as LEOPARD syndrome, Legius syndrome and CFC (Cardiofaciocutaneous syndrome) to name a few of these.
This is why the trustees of NSA are keen to emphasise that NSA membership and activities are also open to all families affected by these conditions and hopefully we’ll see families affected by such conditions at the next Families for Families Day. In fact we have already invited Colin Stone and his family from the UK branch of Costello Kids to the Families Day. Some conditions have their own support networks such as Colin’s, but it’s a warm welcome to all.