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.



I am finding this site really useful,  and am really grateful for it. Now I can tell friends what Emmeline has and they can look it up. Its also good to read about other peoples experiences. Will there be more info about fundraising opportunities?


We’d really like to get to know you a little more here at the Ebsteins Society so we’re encouraging you to add an Avatar to your profile.  The Avatar is a little picture that automatically  accompanies your contributions to the site.  It makes it more personal and lets readers follow dialogs more easily.  So don’t be shy – show us who you are!

If you’re already registered with the Ebsteins Society then just log-in and visit your profile page. There’s a link under the “Name” section.  If you’ve not got an Avatar then there’s a little reminder when you register or make a comment or post.