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Genetic Alliance transforms the healthcare system and engages consumers to reclaim their own health through active participation. Since 1986, we have built partnerships across diverse fields and disciplines and launched groundbreaking tools and resources. To learn about past projects, visit our Archives & History. We recently refocused our programs into three initiative areas: Advocacy-Led Research, Expecting Health, and Stakeholder Engagement.

For Genetic Alliance, advocacy means more than research conducted with participants at the table. It means that the people—groups of patients and activated communities—are truly leading the research effort, empowered with infrastructure and expertise. The concept of research participants becoming research drivers has been core to our identity since our establishment in 1986. Today, many communities of people and individual citizen scientists conduct their own research and lead international, multi-disciplinary initiatives. Genetic Alliance’s tools, partnerships, and projects build capacity in communities, enable cross-sector partnerships, and place control in the hands of the people.

Healthy families are informed, educated, and have access to information and services when they need them. We make that happen. Our Healthy Family Initiative meets a critical need in the health delivery landscape. If you are planning a family or advocating for your child, look no further. We will engage you at all stages of family planning, from pre-conception through your child's first day at college! We have tools that lead to more informed decision-making, educate consumers about appropriate testing and public health services, and help individuals navigate the complex healthcare delivery system. The cornerstone of this enterprise is Baby’s First Test, which houses the nation’s newborn screening educational center for parents and health providers.

Genetic Alliance believes grassroots wisdom will drive biomedical research and healthcare services. Our values and solutions are based in a long and deep history working in and with people affected by rare and common diseases and conditions. Further, Genetic Alliance works with a vast network, cultivated from more than three decades of supporting advocacy organizations and collaborating with clinical, policy, research, and other health institutions at the federal, state, and local levels.

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4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369 | Tel: 202.966.5557 | Fax: 202.966.8553 | EIN 52-1571905

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