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Orphan Diseases: New Hope for Rare Medical Conditions

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Editorial Reviews

Children's Literature
Subtitled, "New Hope for Rare Medical Conditions," here is a welcome book on rare diseases that are not often written about. Most of these rare diseases have a genetic component, and thankfully, at last, are beginning to receive more research support. Author Wendy Murphy writes a compelling story about the struggle for congressional attention to these diseases and the development of the Orphan Drug Act and NORD—the National Organization for Rare Disorders. The book discusses but a few of the six thousand plus rare diseases that are recognized by the National Institutes of Health. These include Autism, Asperger Syndrome, Sickle Cell Anemia and other anemias (although this publisher has devoted an entire volume to Sickle Cell Disease in this series), Achondroplasia (dwarfism), Osteoegenesis Imperfecta (break bone disorder), Cystic Fibrosis, Tay Sachs Disease, Obsessive-Compulsive Disease and other mood disorders, and Immunodeficiency disorders. While the list covered is short considering the range of possibilities, the information presented briefly discusses what is known about the disease, particularly genetically, how each is currently treated and a bit about long-term prospects. The text, unfortunately, is quite dense with long paragraphs, and occasional black-and-white photos are of marginal interest. Readers, as always when using medical texts, should tap very current Internet sources to find the most up-to-date information, and a fine list of Web sites is included here. The Further Reading list is somewhat dated and adult-oriented. There is a useful Glossary, Index and Chapter Notes at the back. The book is part of the "Medical Library" series. 2002, Twenty-First Century Books,
— Elaine Wick
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Product Details

  • ISBN-13: 9780761319191
  • Publisher: Lerner Publishing Group
  • Publication date: 9/28/2002
  • Series: Twenty-First Century Medical Library Series
  • Pages: 144
  • Age range: 12 - 17 Years
  • Product dimensions: 6.00 (w) x 9.10 (h) x 0.70 (d)

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