Links and News

New Cone Repair
conerepair There is just a handful of heart centers in the United States that performs the advanced and innovative cone procedure for repairing the tricuspid valve in children with Ebstein’s anomaly.

In this procedure, extra tissues on the enlarged right side of the heart are folded up, and the malformed valve is surgically reshaped into a cone. The cone-shaped valve opens to a central blood flow and closes with full coaptation (joining, reuniting) of the leaflets.

Tricuspid valve replacement: Sometimes a patient’s tricuspid valve is too malformed to be repaired. In this case, the existing valve will need to be replaced with a mechanical valve or a bioprosthetic one made of human

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Searches related to Ebstein’s Anomaly
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Support Groups

Ebstein’s Anomaly Support Group for Adults

Congenital Heart Defect Forum

Heart Hobbies – UK

The Adult Congenital Heart Association (ACHA)

Ebsteins Anomaly Resources

Canadian Adult Congenital Heart Network

Canadian Congenital Heart Alliance

Grown Up Congenital Heart Patients Association

The Canadian Congenital Heart Alliance (CCHA)

International Society for Adult Congenital Heart Disease (ISACHD)

National Cancer Institute



Adult disability starter kit.

SSA’s childhood disability starter kit.  (under age 18).

Can help answer any questions anyone with Ebstein’s has if they wish to apply.

Discusses income limitations for children who are applying.