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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


We Are R.A.R.E.


Address

4208 Chateau Rd.
Orlando, FL 32808 USA

Phone

407-617-4111

Description

We Are R.A.R.E is a 501(c )(3) organization of parent volunteers promoting awareness, research, and education of rare neurological disorders. Currently this includes, but is not limited to Schizencephaly, DiGeorge Syndrome, Microcephaly and Lissencephaly. We Are R.A.R.E also helps families offset medical costs not covered by insurance. Schizencephaly is a rare disorder that causes clefts in the cerebral hemisphere of the brain. Babies born with Schizencephaly may have developmental delays, impairment of language skills and paralysis of one side of the body. DiGeorge Syndrome is also known as 22q11.2 deletion syndrome, wherein a small piece of chromosome 22 is missing. The symptoms are extremely variable, but can include congenital heart disease, immune system deficiency, endocrine abnormalities, and feeding difficulties. Microcephaly is a medical condition in which the circumference of the head is smaller than normal because the brain has not developed properly or has stopped growing. It can be associated with many rare disorders. Lissencephaly is caused by a lack of development of the ridges of the brain, making the surface appear unusually smooth. This disease causes the head to be smaller, and also causes a host of developmental delays, intellectual impairment, and feeding difficulties.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.