Mohammed faruq_karolia
Welcome
First I would like to let you know that I am the Assistant to the Robinow Syndrome Foundation. We are a support group for everyone that is affected with the syndrome.
My young son also has the syndrome in the Recessive form.
There are many people around the world affected with Robinow Syndrome. No one has stated if they are muslim or not. I would say that since there are many cases of Robinow Syndrome that there are other muslims.
How did you come to get the diagnosis of Robinow Syndrome? If you dont mind my asking, at what age?
When you recieved your diagnosis did they say if it is Dominant or Recessive type?
We have a web site with some information that may be helpful. www.robinow.org
The best information we all have come to know is from each other. Other families, children and adults that have Robinow. Our support group is getting larger each month.
We have many studies currently in process to find out more about Robinow Syndrome from a genetic view. DNA studies are on going in the Netherlands and in Brazil. We have two very wonderful teams of geneticists working to find out more about the complexities associated with Robinow Syndrome.
Our support group currently meets once, every two years. Our next large meeting will be in New York in July 2004. We would welcome you to attend. There will be a newsletter update in the near future on our web page, so please check back often.
If you would like to ask any specific questions about Robinow Syndrome, please feel free to ask. I hope that our foundation is able to offer you useful information and support.
Hope to hear from you soon.
Kim Ortiz
Missouri, USA
Assistant Robinow Syndrome Foundation
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