The Power of Advocacy Organizations

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Genetic advocacy organizations enlist the voices and engage the hearts of individuals and families who yearn for solutions, relief, services, treatments, and comfort. They are by nature grassroots, offering a vehicle for anyone with any background to be involved in advocacy. Advocacy organizations empower individuals and families to take needed action and make their aggregate voices heard.

Though each organization is concerned about a very specific and sometimes isolated aspect of their particular genetic condition, they are all part of a massive consortium of people striving to improve the lives of individuals impacted by genetics. Under the umbrella of Genetic Alliance, these groups are empowered to face the smallest challenges and emboldened to overcome even more global and seemingly impossible obstacles.

Genetic advocacy organizations make a difference in the lives of millions of individuals and families. They move families from despair and give them the tools they need to cope day to day, find solutions, obtain services, and heal. Most importantly, they offer hope. This hope is built on a solid foundation of collective experience and the power and potential of people working together.

Genetic advocacy organizations are where no one else would be. No other entities in society rise to the tasks of giving voice and taking action on behalf of the millions of people living with genetic conditions. The power of an advocacy organization lies in the simplicity and purity of its mission, its passion for its endeavors, and its clear vision of the task before it. This power is practical and focused. It can move mountains, sometimes beginning in the mind of an anguished parent and growing to become a strong, effective organization.

Genetic Alliance acknowledges the hard-won credibility of advocacy organizations. These organizations must fight the impact of their condition and, at the same time, struggle to get funding, enlist researchers, access services, and make these services affordable. In the midst of all this, advocacy organizations also battle to win recognition as essential contributors to the research and treatment that affect their members directly.

Advocacy organizations have a home in Genetic Alliance—a place where their value is immediately recognized, where they are respected for their homegrown sophistication, their understanding, and their ability to empower their members. Genetic Alliance sees its mission as walking hand in hand with advocacy organizations, offering resources and assistance when needed, creating synergies between organizations, and respecting the uniqueness of each organization's challenge and solution. Thus the Alliance itself is infused with the same grassroots potency, and it designs each of its programs to be faithful to this ethos.

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