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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.
International Children's Anophthalmia Network (ICAN)
a/k/a: ICAN
Address
c/o Center for Devel Medicine & Genetics
5501 Old York Road
Philadelphia, PA 19141
USA
Phone
215-456-8722
Fax
215-456-2356
800 Number
800-580-4226
TDD
--
Email Address
ican@anophthalmia.org
Website
The International Children's Anophthalmia Network (ICAN), a voluntary, non-profit organization, is a group of families and professionals dedicated to lending support to individuals who want to learn more about microphthalmia and anophthalmia (eyes that are abnormally small, completely absent, or consist only of vestigial portions). Members of this network are offered the opportunity to enroll in the Anophthalmia/Microphthalmia Registry, which was established to identify all syndromes associated with anophthalmia/ microphthalmia, describe the spectrum of associated anomalies, and investigate whether any teratogens are involved in the etiology of anophthalmia/microphthalmia. The network also enables parents with affected children to share personal experiences, information, and support; take advantage of its database of physicians and educational resources; and learn about ongoing research and medical issues. It provides referrals to genetic counseling, support groups, and other services and promotes professional and patient education, as well as a variety of educational and support materials. A program of screening for eye development gene mutations was initiated in 1999 and is ongoing with the participation of eight labs worldwide. It is coordinated through the Genetics Division at Albert Einstein Medical Center in Philadelphia and supported by the members of ICAN.
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