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Doody's Review ServiceReviewer: Teresa A. Hadro, MS (Children's Memorial Hospital)
Description: This book is exactly what its title claims: a primer for those who wish to draw together a group of people for the purpose of mutual assistance, whether for psychosocial support, fund-raising for research, or for public education about a rare disorder.
Purpose: The authors sought to put together some of the historical wisdom of those who already have formed such groups, with listings of useful resources in order to offer "guidance and encouragement" to those seeking to develop and maintain new support groups.
Audience: The book is intended for both professionals and volunteers. It is highly specific and directed at a very small audience that will, nevertheless, find it an invaluable resource.
Features: The principal author has familiarity with the day-to-day ups and downs of rare disease support groups. In addition to the expected how-to discussions of mission statements, newsletters, fundraising, publicity and programs, the text includes appendixes listing known genetic voluntary organizations, informational and service-oriented resources, a glossary of genetic terms, and an annotated bibliography.
Assessment: This is a highly specific how-to publication directed toward those who wish to form or maintain a self-help organization. This book fills a small niche for a small audience, but for those starting a support group, there will be great rejoicing at their discovery of this book. It belongs in public library collections, and, perhaps, on the bookshelves of genetic counselors and medical social workers.