Robinow Syndrome Foundation

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I am the Executive Director of the Robinow Syndrome Foundation. In 1995 my first child was born and diagnosed. In 2000, it was confirmed he has the Recessive form of Robinow Syndrome. I met several other families in the USA during a Robinow Syndrome Convention in 1996. The foundation members/families provided information that was invaluable to the care I needed to provide my child. This early conatact with other families help me to learn how to advocate the medical care that was necessary and how to avoid possible medical treatments that were not necessary or could adversely affect my child. 

In 2010, my volunteer work and family advocacy with the Robinow foundation led me to adopt a very ill baby that also has Robinow Syndrome. My youngest son, now 6-years-old has the domnanat form and is a healthy and happy boy. 

Our members grow every month. Our Foundation has members from all parts of the world. 

This map is another great way we can all conect and support one another. 

The Robinow Syndrome Foundation welcomes all who are intersted in connecting with others.

One of our goals is to help provide support and advice to complex medical questions and/or concerns as early as possible to help families. Often the best information is available through the experiences of other families. I urge families of newborn or young babies/children to contact us as soon as possible when there is a possiblity or diagnosis of Robinow Syndrome.