Medical advisors (Bristol Children's Hosp.): Dr Andrew Tometzki MB ChB, MRCP, FRCP Mr Massimo Caputo MD, Mch
most patients enjoy an excellent quality of life
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I hope that I have created the site that I wanted to find the day that my daughter Florrie was diagnosed with Ebsteins Anomaly.
Ebsteins Anomaly of the tricuspid valve is an extremely rare heart condition but its impact is significant to those affected.
The problems experienced by those with Ebsteins Anomaly are made worse because most people know nothing about the condition, and are unlikely to know anyone else who has Ebsteins Anomaly.
I hope that ebsteins.org will change this
I have set up ebsteins.org with three aims:
- To provide a place for all those affected-by or involved-in Ebsteins Anomaly to share information and exciting developments in research, and learn from the experiences of others.
- To raise awareness and provide about Ebsteins Anomaly.
- To raise money to fund research into Ebsteins Anomaly that will not otherwise be carried out.
Ebsteins.org has been set up for both medics and those affected by Ebsteins Anomaly, because we believe that by working together we’ll be better.
Please learn more about why ebsteins.org was set up.
Caroline Clarke