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Advocacy, Education & Empowerment

Hope and Health Project

Help Support Children and Youth With Special Health Care Needs in Puerto Rico.

Sharon Terry on NPR's Radio Hour

Hear Sharon Terry's Radio Hour talk, "When Siblings Get A Rare Diagnosis, Can Their Parents Find the Cure?"

Sharon Terry's TEDMED Talk Crosses Milestone

Sharon Terry has officially gone viral. "Science Didn't Understand My Kid's Rare Diseases Until I Decided to Study It" has amassed over 1,000,000 views and counting!

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BioTrust holds the space for individuals, families, and communities to participate in translational research.  The revolution in health will only happen in a trust environment with people at the heart of it. BioTrust examines and creates policies, and provides novel tools for participants to actively engage in research.  The BioTrust Ethics Team, together with the Genetic Alliance Institutional Review Board, provides oversight.

With better health as the goal, Genetic Alliance puts genetic and genomic information into context for individuals and families. Our tools increase access to services and provide the information people need, when they need it. From family health history to whole genome sequencing, our combination of accessible, culturally competent print and web resources, multimedia, and health information technologies empower people to make healthy decisions.

Engaged families are informed, educated and have access to information and services when they need them most. If you are planning a family or advocating for your child, Expecting Health meets a critical need in the health delivery landscape. We have tools that lead to more informed decision-making, educate consumers around appropriate testing and public health services, and help individuals navigate the complex health care delivery system.


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

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.

March 9-10, 2017 we enjoyed two days of celebration, ideation and collaborative visioning as we began “Co-Creating a Healthy Future”

Find resources on advocating for accessible communities with Advocacy Atlas!

A Twist of Fate (ATS). ATS is a worldwide initiative dedicated to finding a cure for arterial tortuosity syndrome, by supporting research, education, awareness, and families. Stop by their

Building online health and wellness communities for patients and caregivers

Learn all you need to know about Newborn Screening.

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