Anyone have Severe Cyclic Neutropenia or knowledge of?

The doctors have reason to believe that my 5 month old son may suffer from a rare syndrom called Severe Cyclic Neutropenia. They have done, and are going to do further bloodwork and genetic testing to be sure. Does anyone know anything about this disorder and where I can find some reputable online sites regarding this? I want to research it as much as possible. Thanks in advance.

Please Help.?

Answers:
I'll give you some sites:

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I don't know the answer to your question, but my favorite sites for medical information are uptodate and pubmed.
Uptodate is for doctors, etc but there is a patient information section. You have to type in one word at a time, such as neutropenia.
pubmed can be very detailed, and you can type the entire phrase in at once.
Good luck, and best wishes for your son.

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http://www.merck.com/mmhe/search.html?qt=Severe+Cyclic+Neutropenia&qp=%2Bsite%3Awww.merck.com+%2Burl%3A%2Fmmhe+-url%3Aprint%2F+-url%3Aindex%2F+-url%3Aresources%2Fpronunciations+-url%3Amultimedia%2F+-url%3A%2Fmmhe%2Fau+-url%3A%2Fmmhe%2Fag&charset=utf8&la=en&start=0

http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Neutropenia%2C%20Cyclic

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Anyone have Severe Cyclic Neutropenia or knowledge of?

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