Privacy

We consider your privacy and that of the person with Velo Cardio Facial Syndrome (VCFS) as paramount. It is a medical condition and our general advice to parents and patients is that it should only be disclosed to those who really need to know.

In years past, finding out information about clinical conditions and genetic disorders required a determined effort and access to the right resources. Essentially it was too hard for most people to be bothered with.

Today, it is likely that you’ve found us with just a few keystrokes all from the comfort of your own home. The net has made it easy for anyone to access a mountain of information (& misinformation) about VCFS with little or no effort.

The danger is that it can make it far too easy for lay people to become instant experts and assume the worst about VCFS patients without knowing all the facts. Ultimately it is the patients and their families who suffer.

Knowing who to tell, when and what to tell them is a choice that needs to be balanced in light of all the facts. With this in mind we’re careful about your privacy and that of all our members.