Anophthalmia / Microphthalmia
Who to Contact
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International Children's Anophthalmia Network (ICAN)
c/o Center for Developmental Medicine and
Genetics
5501 Old York Road
Genetics, Levy 2 West
Philadelphia, PA 19141
Phone: 1-800-580-ican
Email: ican@anophthalmia.org
Website: http://www.anophthalmia.org/
The International Children's Anophthalmia Network (ICAN), a
voluntary not-for-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).
Established in 1993, ICAN also enables parents with affected children to share
personal experiences, information, and support; take advantage of the Network's
database of physicians and educational resources; and learn about ongoing
research and medical issues. ICAN provides referrals to genetic counseling,
support groups, and other services and promotes professional and patient
education. It provides a variety of educational and support materials through
its computer database, directory, and regular newsletter.
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Micro & Anophthalmic Children's Society (MACS) -- United Kingdom
22 Lower Park Street
Holyhead
Isle of Anglesey
North Wales
LL65 1DU
E-mail: enquiries@macs.org.uk
Website: http://www.macs.org.uk/
MACS aims to put families in touch with others who have similar problems; to arrange a yearly get together so that parents and children can meet and discuss issues and give encouragement; to produce a newsletter three times a year; to raise public awareness to the needs of visually impaired and totally blind children; and to acquire computer technology for the production of large print and Braille books for the benefit of our children.
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