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Advocacy, Education & Empowerment

Disease InfoSearch

Are you looking for disease information or support? You’ve come to the right place! Simply type in the name of a condition above and Disease InfoSearch will locate quality information from a database of more than 13,000 conditions and thousands of support groups and foundations.

Baby's First Test

Baby's First Test houses the nation's newborn screening clearinghouse. The clearinghouse provides current educational materials, services information, and resources about newborn screening at the local, state, and national levels.


A unique, award-winning technology solution for collecting health data directly from individuals.


CENA provides methods and tools that empower everyday people to be full participants in the research enterprise, work with a variety of stakeholders to prioritize research questions most important to them, and drive new studies to alleviate suffering in their own communities.

We believe individuals, families, and communities are experts of their own needs. Our programs and tools are therefore designed to give people the tools to shape their own healthcare by finding resources for conditions/diseases, conducting research for new treatments, or partnering with providers to improve care.

Individuals, families and communities must be fully aware and engaged to empower people to make healthy decisions. From family health history to whole genome sequencing, our tools, multimedia, and health information technologies increase access to health services and provide information people need when they need it.

Expecting Health is a team of key leaders in health communication and pregnancy and pediatric health, with a strong passion for bridging actionable information with the everyday realities of women’s experiences and family lives. We know that education and support don’t start or end at childbirth.


Learn about internship opportunities at Genetic Alliance during the fall, spring, and summer!

Find resources on advocating for accessible communities with Advocacy Atlas!

Stay Up To Date with News, Action Steps, Meetings & More!

Disease InfoSearch is a resource for patients, clinicians and researchers.

A place to learn about all the ways genetics is a part of your life.

Learn all you need to know about Newborn Screening.

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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

Except where otherwise noted, content on this site is licensed under a Creative Commons Attribution 3.0 License.