Why Go There?

Do you really want to found, maintain, or work for an advocacy group? If you are using this guide, then your answer to this question is obviously yes. But we pose the question because founding or maintaining an advocacy group isn’t always an anticipated and deliberate activity. You may have come to this place in response to a deeply personal and painful experience. You may have come to it because you believe in the power of people helping people.

Even if you are doing this purely as your occupation, you probably have a personal connection with someone, somewhere, who could have benefited, or did benefit, from an advocacy group. Whatever your point of entry, it helps to listen to the stories of others who have come to this place.

This book doesn't deal very much with the stress and anxiety the advocacy group leader may face. It is important that you find resources to renew yourself. Particularly if you have an affected family member, you have a great burden on your shoulders and will need to have support along the way.

Occasionally advocacy groups have a strong sense of their mission. This mission might not meet a need that you perceive. You may contemplate starting another group for the condition. The Genetic Alliance neither endorses nor condemns such a decision, aware that there are different and diverse needs from various individuals within a condition-specific community.

For example, part of the community may want the group to focus on services for affected individuals, and another part of the group may prefer the focus to be research. Other apparent dichotomies can arise as well. It appears there are a number of solutions to these challenges, and all of them have effective models in the advocacy community. In any case, it is best if the various groups can work together on some level. Cooperation will speed the common tasks and provide a clearer message to the affected individuals in that community.

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