Reviewer: Andrea D. Posey, RN, BSN, MSN (University of Alaska Anchorage)
Description: This is a reference guide to rare diseases, disease specific organizations, umbrella organizations, and government agencies that assist people affected by rare disease. The first edition of this book, a publication by the National Organization of Rare Disorders, was published in 1998.
Purpose: The purpose is to provide the public with information about rare diseases and support organizations. This information can be difficult to find and this book meets the author's objective by making the information easy to access.
Audience: The book is written for general readers and healthcare professionals. It is aimed at those who need assistance in finding information and resources about specific rare diseases. The language is scientific in nature and may be difficult for the average reader.
Features: The directory is a comprehensive listing of 1,117 rare disorders and 1,386 support organizations. It is divided into four sections that address descriptions of rare diseases, organizations that support specific diseases, umbrella organizations, and government agencies. The publication is well organized and specific information is easy to find.
Assessment: This is an excellent resource for people who need information about specific rare diseases and where to find support. The content is comprehensive and will be useful to healthcare providers and case managers who seek community support and resources for their clients. The second edition provides information on more diseases than the first edition.