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ERIC Number: EJ803046
Record Type: Journal
Publication Date: 2008-Aug
Pages: 7
Abstractor: ERIC
ISBN: N/A
ISSN: ISSN-0046-9157
Rare Disorders and Diseases
Umlauf, Mary; Monaco, Jana; FitzZaland, Mary; FitzZaland, Richard; Novitsky, Scott
Exceptional Parent, v38 n8 p26-32 Aug 2008
According to the National Organization for Rare Disorders (NORD), a rare or "orphan" disease affects fewer than 200,000 people in the United States. There are more than 6,000 rare disorders that, taken together, affect approximately 25 million Americans. "Exceptional Parent" ("EP") recognizes that when a disorder affects a child or adult, it affects the entire family. It affects close friends. It touches the community of people who support and surround that individual--schools, businesses, communities of faith. In this multi-page article, "EP" draws attention to a mere four of the known rare disorders, these spotlighted because loving parents of children with the disorder reached out to "EP," asking them, entreating them to bring greater awareness to the disease with which their children are challenged. "EP" listened and presents this article on 22q11 deletion syndrome, isovaleric acidemia, Ohdo syndrome, and Rett syndrome, with each section authored by the parents who know these diseases intimately due to their personal experiences in caring for their children.
EP Global Communications Inc. 551 Main Street, Johnstown, PA 15901. Tel: 877-372-7368; Fax: 814-361-3861; e-mail: EPAR@kable.com; Web site: http://www.eparent.com/
Publication Type: Journal Articles; Reports - Descriptive
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A