Hi
This is a new site set up to help build a community of those with Ebsteins, and those who are involved in some other way with this condition. Our long term aim is to raise awareness and fund important research, whilst also providing information and support.
I would like you to suggest ways to develop ebsteins.org – let me know what you would like to see on it, as I have set it up as a resource for all of you.
I would welcome all ideas and feedback.
Caroline
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This is a wonderful website, clear and informative. Well done to all those involved.
Comment by Andrew — January 11, 2010 @ 10:13 pm
Hi Caroline,
This is an excellent website.
There is however one point I would like you to enlarge on and it is about your epidemiological study of the incidence and treatment of Ebstein’s. With all the data protection which exists these days how would your researcher get hold of this information? Have you had any preliminary thoughts about this?
Secondly I would like to see a line showing the money needed for this project and beside it a line showing how much has been raised towards it.Then we would have a better idea of what is needed and how best to help.
Charles
Comment by Charles Briscoe — July 8, 2010 @ 10:09 am