RCDP National Registry

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National Registry
RCDP National Registry Information

Rhizo Kids Ohio in conjunction with Rhizo Kids International is sponsoring a registry of individuals with Rhizomelic Chondrodysplasia Punctata (RCDP). The purpose of this registry is to learn more about RCDP and how to predict and treat medical issues that arise as a result.

The name of the registry is “The Rhizomelic Chondrodysplasia Punctata Registry at A.I. duPont Hospital for Children”. Dr. Michael Bober at Alfred I. duPont Hospital for Children is the physician in charge of this registry.

The following other specialists are also involved: Angie Duker, Study Coordinator, A.I. duPont Hospital for Children and Cassie Brown, Research Coordinator, A.I. duPont Hospital for Children.

If you would like more information about this registry or would like to discuss if you or a loved one is eligible to participate please contact:

Dr. Michael Bober at 302-651-5916
Angie Duker at 302-651-4181
Cassie Brown at 302-298-7930

 

Help Us End RCDP

Most Children with RCDP do not survive past 5 years of age. Our organization is currently raising monies for research, and working diligently to raise awareness of RCDP.

Your help is needed to put an end to this terrible disease.


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