Sorry, you need to enable JavaScript to visit this website.

Sign Up For Mailing List Button

Disease Search Button

Advocacy, Education & Empowerment

Fall Webinar Series

Genetic Alliance is offering a webinar series showcasing advocacy and community organizations' successes in engagement and research, and preparing a library of what advocates and community leaders need to know from various domain experts.

Dr. Francis Collins on the Coronavirus Vaccines

Dr. Collins was a leader in the development of coronavirus vaccines, and is working hard to make sure they are widely available. He describes the scientific evidence for the safety and efficacy of the vaccine and why it is important to get vaccinated when it is your turn. 

Women's Study

We are in the first phase of gathering information about what matters to women. Several scientists are standing by to analyze this information to inform both actual research and research priorities. Join us – take this bull by the horns and help to ensure the needs of women are understood, prioritized, and served. We are offering this to help women and organizations committed to women’s health.

2021 ASHG Advocacy Award

The American Society of Human Genetics (ASHG) has named Sharon Terry, MA as the 2021 recipient of the Advocacy Award. Terry is president and CEO of the Genetic Alliance, an organization engaging individuals, families, and communities to transform health.




A program designed to guide you through a methodological process that will ensure not only a sophisticated technology platform, but success in its use and meeting overall registry goals.




If you run a registry, please answer this anonymous survey to help advocacy organizations in understanding what it takes to run a registry - cost to start up, staff needed, and so on.




PEER offers communities (the sponsor) a simple way to establish a registry. It is a sophisticated registry and study system, and a cost-effective solution to your registry needs.


Everyone is encouraged to participate—this is a borderless data sharing community for both those feeling healthy and those needing medical attention.

The Genetic Alliance IRB reviews and monitors studies involving human participants to ensure that the highest ethical standards adhear involving the use of humans as subjects in research. 

Curated and crowd sourced disease information to help individuals access quality and credible information. Over 10,000 conditions listed.

Follow Us

Twitter icon
Facebook icon
LinkedIn icon
YouTube icon

26400 Woodfield Road #189, Damascus MD 20872 | Tel: 202.966.5557 | EIN 52-1571905

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