Advocacy, Education & Empowerment

Impact Awards Proposals Due March 14th

The Impact Awards are to expand the reach of existing collaborative projects that demonstrate the ability to improve access to genetic services and support. Click for more details!

Genetic Alliance and CDC Launch New Videos on Public Health Genomics!

More than one million people in the United States are at increased risk for cancer due to Lynch syndrome and hereditary breast/ovarian cancer. Watch these videos and learn more about the work being done in screening and prevention for these conditions in different states across the country.

Gathering Perspectives from the Sickle Cell Community

Sharon Terry writes about the Patient-Focused Drug Development (PFDD) initiative for Sickle Cell Disease. PFDD seeks the perspectives of patients and caregivers about benefits and risks in the development of new treatments.

Patient-Focused Drug Development Sickle Cell

Congratulations Sharon Terry!

Sharon Terry is selected for the PCORnet Steering Committee Executive Committee. Learn more about CENA and PCORnet here!

You can help to change the face of sickle cell disease... forever!

In February 2014, the FDA plans to hold hearings into sickle cell disease, and our voices need to be heard there. This is your opportunity to let regulators know about the unmet medical needs of our community. We need to let the FDA hear the patient’s perspective.

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.