For those of us in the UK our hospitals have a particular challenge as they see relatively few cases of Ebstein’s compared with the US.  To make this worse, cases of Ebstein’s divided geographically over a number of hospitals rather than having one or two hospitals of excellence.  This means that because Ebstein’s is rare, surgeons may peform very few operations, so knowledge and expertise is slower to build than somewhere like the Mayo clinic.

In addition, techniques such as the innovative cone surgical intervention, as far as I know are not available in the UK as yet.  Funding is short because the condition affect so few people (relatively), and we have not yet had a UK study to actually clarify how many people have been diganosed with this condition.  One aim of this site is to increase the level of expertise in this condition, through fundraising activity and donations.

Please post your comments about Ebstein’s in the UK.  I for one would like to know that if my child needs it, then she will get the most up-to-date surgery that is available, and we need to find a way of bringing this to the UK.

Caroline