Founded by Caroline Clarke and Tim Gibbs with help from Dr. Andrew Tometzki and Mr. Massimo Caputo (at Bristol Children’s Hospital), this tax-exempt charitable Society is for all those who are affected by or involved in any area concerned with this rare heart condition.
The Society allows parents (or relatives) to share experiences, to chat together, to read the up-to-date research and to raise money to fund research into this condition. In addition, medical practitioners can connect with the Society to share knowledge and best practice, and to read recent research which may advance their field.
Ebstein’s Anomaly is rare. This is important because :
- research into Ebstein’s attracts very little funding. There have been very few large studies of those with this condition.
- within the UK (and probably elsewhere) each hospital sees relatively few cases, and therefore knowledge and best practice about this condition is slow to build up.
We strongly believe parents must champion this cause through fundraising and other activity (after all they have the most powerful motivation for doing so), but they are only one part. Medical practitioners also need to share, develop and apply knowledge in order to advance practice. Together we can make a powerful contribution both for our children and for others affected by this condition.
Since its inception of the website, it was quickly apparent that the need for a more structured approach was needed. The Ebsteins Society was formed as a charity with a constitution and a board of trustees to do just this.
We also welcome those who are kind enough to step into our shoes for a moment to understand the need to raise awareness, and why this is such a vital area for attention.