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Advocacy, Education & Empowerment

Meaningful Patient Engagement is More than an App or Big Data

To help navigate a path forward driven by the patient perspective, the National Health Council and Genetic Alliance convened a meeting of the leading thought leaders on the issue and released their findings in a white paper around a vision for advancing patient engagement in the research-to-care continuum.

Thanksgiving Is Family Health History Day

You can order free copies of our toolkit to share at your Thanksgiving table.

Thanksgiving is Family Health History Day - Genes In Life provies Free booklets to help you engage your family in talking about health.

Genetic Alliance and Private Access Launches

PEER helps to build communities of people who appreciate the need for accelerating medical research and who have value deciding why and with whom they entrust their personal health information.  

Genetic Alliance’s PEER Registry Recognized at White House PMI Event

The award-winning Platform for Engaging Everyone Responsibly registry (PEER), developed by Genetic Alliance and Private Access, was showcased along with four other precision medicine tools at today’s White House Champions for Change Celebration.

Genetic Alliance is Hiring!

Now hiring: Program Asisistant, Administrative Coordinator, Web Development and Technology Specialist, and HIT Program Assistant. Click the image to read the job descriptions and apply today!

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.

It’s time to take control of our health! Come together to Free The Data.

Find resources on advocating for accessible communities with Advocacy Atlas! is a website run by patients with fibrolamellar hepatocellular carcinoma and their families. It works to help learn more about this rare cancer and to advance research and treatments.

Building online health and wellness communities for patients and caregivers

Learn all you need to know about Newborn Screening.

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

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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.