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Advocacy, Education & Empowerment

PXE and DCO Launch Patient-Centered Registries

CENA announces the launch of two new patient-powered research networks in PCORnet, on November 19th, 2014.

CENA launches two new registries with PXE and DCO

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.

Baby's First Test Launches Spanish Site

Get the latest newborn screening news, share stories, and connect with others!

Welcome to the Spanish Site!

Free The Data announces new partnership with Rep. Debbie Wasserman-Schultz!

The Congresswoman continues her dedication to advancing medical research and improving care for hereditary breast and ovarian cancer. Watch her discuss Free the Data and hereditary cancer on PBS' To The Contrary.

Debbie Wasserman Shultz

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.


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 advocacy for accessible communities with Advocacy Atlas!

DNA Digest works to educate, facilitate, and engage on issues regarding access to genomic data.

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