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Advocacy, Education & Empowerment

Community Engaged Network for All

CENA announces that two of the nine disease advocacy organizations in the network launched research registries on September 15, 2014. Spotlight on the National Gaucher Foundation and Joubert Syndrome and Related Disorders Foundation.


Interview with Sharon Terry on Entrepreneurship

Watch this excellent and inspirational interview video with Sharon Terry, President and CEO of Genetic Alliance, about her personal journey as a mother to mother/entrepreneur/disease advocacy organization founder/President and CEO of Genetic Alliance.

Sharon Terry Entrepreneurship Interview

Celebrating 50 Years of Newborn Screening!

Newborn screening is an invaluable public health program. This September marks the 50th anniversary of newborn screening.  Learn more at

Newborn Screening

New Article on a Cutting Edge Platform

The Platform for Engaging Everyone Responsibly (PEER) is revolutionizing how research, information, and better care can co-exist by enabling participants to control who sees their health information and how it is used. Read on.

New Article on PEER: We're all needles

Get to know the Genetic Alliance Programs!

Babys First Test, Genes In Life, Disease InfoSearch, PEER and more are all powered by Genetic Alliance. Together we are committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. Click to learn more!

Genetic Alliance Programs

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.

Our experts have the answers to your questions on genetics and health

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!

The Familial Hypercholesterolemia (FH) Foundation is exclusively dedicated to raising awareness of all forms of Familial Hypercholesterolemia (FH) through education, advocacy, and research.

Building online health and wellness communities for patients and caregivers

Join the Movement to Raise Awarenss about Newborn Screening!

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