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Starting and Sustaining Genetic Support Groups

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This book is a guide to genetic support groups--what they are, how to begin one, how to keep an existing group operating and successful. Because a support group may be started, run, and joined by genetics professionals or laypeople, the text contains information usable by a range of readers.

The book opens with a brief discussion of why people seek self-help organizations in general and genetic support groups in particular. The bulk of the text then explains how to organize a ...

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Overview

This book is a guide to genetic support groups--what they are, how to begin one, how to keep an existing group operating and successful. Because a support group may be started, run, and joined by genetics professionals or laypeople, the text contains information usable by a range of readers.

The book opens with a brief discussion of why people seek self-help organizations in general and genetic support groups in particular. The bulk of the text then explains how to organize a genetic support group (getting started, finding a leader), how to sustain the group (developing educational materials and newsletters, conducting a meeting, fund-raising), and how to organize peer support training programs. The authors present examples of existing groups' experiences, sample budgets and news releases, tables and checklists, and other specific information to guide readers.

The book contains black-and-white illustrations.

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Editorial Reviews

Doody's Review Service
Reviewer: 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.
Teresa A. Hadro
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. 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. 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. 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. 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.
Booknews
Arrangement of the selections is chronological, except for the early 19th century, when the progression is interrupted in order to arrange texts by topic. The introduction to each section places the literary works in their historical context and notes later cultural resonances. Following each text is an introductory guide to primary and secondary sources, including available aesthetic transformations of the work, its subjects, and its motifs in film, video, musical recordings, and art collections. These listings emphasize Russian rather than non- Russian responses in the arts (e.g. Sergei Bondarchuk's film adaptation of War and Peace rather than the American version). Rzhevsky is in the Russian department at SUNY, Stony Brook. Paper edition (unseen), $29.95. Annotation c. Book News, Inc., Portland, OR (booknews.com)

3 Stars from Doody
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Product Details

  • ISBN-13: 9780801852640
  • Publisher: Johns Hopkins University Press
  • Publication date: 6/1/1996
  • Edition description: New Edition
  • Edition number: 1
  • Pages: 153
  • Product dimensions: 6.02 (w) x 8.94 (h) x 0.59 (d)

Meet the Author

Joan O. Weiss, M.S.W., is executive director of the Alliance of Genetic Support Groups in Chevy Chase, Maryland. Jayne S. Mackta is executive director of the New Jersey Association for Biomedical Research in Elizabeth, New Jersey.

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Table of Contents

Acknowledgments
Introduction
How to Use This Book
1 The Evolution of Self-Help Organizations 1
2 Why People Seek Genetic Support Groups 16
3 Peer Support 33
4 How to Organize a Genetic Support Group 37
5 Communications and Publications 62
6 Meetings and Major Program Areas 84
7 Fund-Raising 102
Epilogue 114
Appendix A: List of Known Genetic Voluntary Organizations 117
Appendix B: Resources 124
Appendix C: Overview of One Group's Success 133
Glossary 137
References 141
Annotated Bibliography 145
Index 151
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