Sign Up For Mailing List Button

Donate to Genetic Alliance

Disease Search Button

Advocacy, Education & Empowerment

ACD Precision Medicine Initiative Working Group Public Workshop

This workshop is one of four designed to help inform the vision for building the PMI national participant group that the NIH has been tasked to develop. The meeting location has limited capacity, so register today! The meeting will also be live-streamed.

Baby’s First Test Upgrades English and Spanish Newborn Screening Web Tools

As the nation’s newborn screening educational resource center, Baby’s First Test provides parents, healthcare professionals, and the public access to reliable, up-to-date information and resources on the newborn screening process.

PEER Project Awardees Announced

Genetic Alliance has awarded 15 organizations the ability to utilize PEER to engage communities in building registries or conducting surveys. See the list of awardees now!

View the list of awardees now

Please Sign On

We oppose provisions within the Preserving Employee Wellness Programs Act (S. 620/H.R. 1189) that would repeal certain GINA and ADA requirements.

Sign On to Preserve GINA and ADA Protections

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.

Highlights

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 advocacy for accessible communities with Advocacy Atlas!

Fibroregistry.org 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!

Twitter icon
Facebook icon
LinkedIn icon
Google+ icon
YouTube icon

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.