Getting Your Needs on Government and Legislative Agendas
Alliances and Coalitions
Alliances and coalitions can bring many benefits back to your organization. They can offer visibility, yield networking opportunities, and create wonderful opportunities for you to strengthen your own organization by learning about the successes and pathways of others. The two major forms of combined efforts are umbrella organizations, such as Genetic Alliance, and organizations whose primary focuses are very similar, such as the Coalition of Skin Diseases. An alliance may specifically seek to amplify the voices of groups that support rare conditions (National Organization for Rare Disorders) or may focus on a shared need or challenge that organizations have (such as Research!America for health-advocacy organizations).
Alliances and coalitions can organize group responses to events, such as mobilizing awareness or letter-writing campaigns around legislations. They can also provide a single platform to get visibility for a large number of diverse organizations. At professional conferences, organizations may not be permitted to share booth space; a coalition can represent several organizations, as does the Coalition of Skin Diseases at the American Academy of Dermatology. This dramatically reduces the cost for those organizations to have a presence at the meeting as well as creating visibility for all the organizations represented.
It sometimes seems as if there is a finite amount of funding or attention available, and that it is important to focus as much as attention as possible on your specific issue. Yes, it is important to get visibility and attention for your organization and its goals, but realize that alliances can help you do that, even if they might seem to diffuse the potential response for your organization over other organizations. We'll talk a little more about how this works in later sections.
Getting Involved
Every alliance and coalition has a particular theme or focus. As you research alliances and coalitions, focus on those with the strongest shared interests. Maximize your energy for participating in alliances by choosing only the best matches. Some coalitions require a membership fee to participate in their activities or get full access to their materials or websites. Not all groups that require a fee will offer you the kind of visibility, networking, or mentorship your organization needs.
Learn what alliances offer and be honest about what you need. If an alliance's main method of sharing information is a high-traffic mailing list, and you can't deal with any more email than you're already getting, look to see what else an affiliation with that organization can offer you, and be prepared to look at other alliances if you're not seeing something you need.
If your organization serves a condition that is part of a constellation of related conditions, be sure to research who is serving related conditions and whether an alliance is already in place. You may have a chance to found your own coalition! Genetic Alliance has a member search function that can help you here; Genetic Alliance mailing lists are another avenue to call out for related organizations.
Different organizations will offer different opportunities for participation, from special projects and task forces to standing committees. Get to know the organization, some of the members, and its structure, and watch for calls for participation—or consider proposing one yourself!
A Selection of Coalitions
National Organization of Rare Disorders
Coalition for Heritable Disorders of Connective Tissue
