How to Use This Guide

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This guide is a resource for a range of organizations, from the very small kitchen-table group (or maybe just a thought in the mind of a parent) to an established organization 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 an advocacy organization 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 and painful and difficult; it may also be empowering. It may provide one with the energy and enthusiasm to organize or direct an advocacy organization.

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

Premise: There is no right way to found or maintain an advocacy organization.

This resource is not a "just add water" formula for creating or sustaining an advocacy organization. It is a starting point for focusing on the issues that can help you to start or sustain your organization. If you are examining many aspects of your organization or ideas we recommend that you complete the diagnostic section, in Part II

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

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