How to Use This Guide

This guide is a resource for a range of groups, from the very small kitchen-table group (or maybe just a thought in the mind of a parent) to an established group looking to expand or refine its mission. Through stories, how-tos, pointers, and (optional) exercises, we'll help you focus on your goals so you can map out a strategy to meet them.

The desire to establish a support group can have many catalysts. Frequently there is a personal, often familial, connection with the relevant condition. A personal experience of a condition can be a life-altering event – painful and difficult, it may also be empowering. It may provide one with the energy and enthusiasm to organize or direct an advocacy group.

Advocacy groups reflect large variations in philosophy, goals, governance, management, and activity. Many effective groups do things in entirely different ways.

Premise: There is no right way to found or maintain a lay advocacy group.

This resource is not a "just add water" formula for creating or sustaining a lay advocacy group. It is a starting point for focusing on the issues that can help you to start or sustain your group. If you are examining many aspects of your group – or idea – we recommend that you complete the diagnostic section, in Part II. If you are only concerned with a limited issue, then find the section of Chapter 5 that deals directly with your question.

There is no substitute for the immense amount of support available from other successful lay advocacy groups. Contact the Genetic Alliance to find mentors to help you with your projects and concerns. Also, consider joining the Member Forum email list—a great place to bring questions and find the expertise you need to help you.