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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.

Establish Your Registry

 

REGISTRY

BOOTCAMP

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.

Registry Survey

 

YOUR EXPERIENCE

WITH REGISTRIES

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.

Registry System

 

ALL COMMUNITIES

ARE WELCOME

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.

Highlights

Play an Essential Role


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

Institutional Review Board

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. 

Find Support and Resources

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

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