Advocacy, Education & Empowerment

In Loving Memory of Jonathan Weiss

Jonathan Weiss, 38, died from complications following a heart transplant on July 1, 2004 at the University of Washington Medical Center. Jonathan was the motivating force for the formation of the Alliance of Genetic Support Groups (now Genetic Alliance) by his mother, Joan O. Weiss, who recognized the value of a support organization.

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.

Genetic Alliance is Hiring!

We are hiring for 2 positions- Programs Assistant and Program Assistant, Expecting Health. Click the image to read the job descriptions and apply today!

First Technology Pilot Program Shares Perspective of Sickle Cell Community w/ FDA

New blog post discusses key findings from a patient-driven data collection effort intended to complement an FDA initiative which was part of the most recent reauthorization of the Prescription Drug User Fee Act. Read the post!

First Technology Pilot Program Shares Perspective of Sickle Cell Disease Community with FDA

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.

BioTrust

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.

Genes In Life

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.

Expecting Health

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.