Our Programs and Resources

Programs

iHope Genetic Health

iHope™ Genetic Health is a program that diagnoses the undiagnosed across the globe. We address a desperate need to make genomic medicine available to all individuals regardless of their social status, income, or geographic location.

Institutional Review Board

Genetic Alliance's Institutional Review Board fosters research and discovery through a people-centered approach to reviewing research protocols. Under Genetic Alliance's IRB, protocols are reviewed with an eye for harm and burden to a participant, without the authoritative paternalistic regulation of other institutions. We value protecting people by ensuring that review occurs in a timely manner, with low costs and minimal restrictions.

BioBank

The Genetic Alliance BioBank provides communities and organizations the infrastructure needed to collect, archive, and distribute all types of biospecimens.

Registry

The Promise for Engaging Everyone Responsibly (PEER) is a unique, award-winning technology solution for collecting health data directly from individuals. The platform—designed to accommodate any data sharing and privacy preferences—gives individual users complete control over how their data is shared and used for research.

Registry Bootcamp

RegistryBootcamp.org offers advocates, advocacy organizations, and other community groups the information and strategies needed to launch and manage an impactful registry. Whether you are looking for an introduction to registries, a deep dive into a specific sub-topic, or a practical guide, this site has something for you.

Disease InfoSearch

Are you looking for disease or condition information, news, and support all in one place? Disease InfoSearch is the right place to start! Disease InfoSearch locates information from a database of more than 10,000 conditions and from thousands of partners.

Resources

NETS

Navigating the Ecosystem of Translational Science (NETS) was created to map the drug development process and make currently-existing tools more accessible by compiling them in user-friendly toolkits. This web-based map is designed to both educate and empower participation in translational research.

WikiAdvocacy

WikiAdvocacy is a resource for a range of organizations, from the very small “kitchen-table” group to an established institution looking to expand or refine its mission. Through stories, how-to’s, tips, and exercises, WikiAdvocacy can help focus your organization’s goals and map a plan to meet them.

Advocacy ATLAS

This digital Advocacy ATLAS toolkit was created in partnership between Genetic Alliance, Parent to Parent USA, and Family Voices to provide individuals with special healthcare needs and their families with tools and strategies to advocate for their needs.

Expecting Health

Expecting Health shares science-based and policy-informed information that reflects the lived experiences of individuals and their families. This is accomplished through the power of relationships; convening the top experts; working with key leaders in health; and engaging with families and communities at the center of the conversation.

Genetic Testing and Molecular Biomarkers

Genetic Testing and Molecular Biomarkers, official journal of Genetic Alliance, is the leading peer-reviewed journal covering all aspects of human genetic testing including molecular biomarkers. The Journal provides a forum for the development of new technology; the application of testing to decision making in an increasingly varied set of clinical situations; ethical, legal, social, and economic aspects of genetic testing; and issues concerning effective genetic counseling. This is the definitive resource for researchers, clinicians, and scientists who develop, perform, and interpret genetic tests and their results.

Publications

Genetic Alliance publications are aimed at emerging and experienced advocacy leaders, researchers, healthcare providers, and policymakers. All of our publications are available for free download and posting, as long as Genetic Alliance is credited as the author and the content is not modified in any way.

Genetic Alliance Network Announcements

Periodically, Genetic Alliance will alert you to important action items, announcements, and deadlines, including Genetic Alliance-specific material as well as information from the genetics, health, and advocacy communities. Some weeks there will be no emails; other weeks one or more might be sent to the list.

Community Forum Discussion

Being a part of the Genetic Alliance network gives you access to valuable online meeting spaces that provide an opportunity to discuss as a virtual community.

Genetic Alliance is registered as a 501©3 nonprofit organization. Contributions to Genetic Alliance are tax-deductible to the extent permitted by law. Our tax identification number is 52-1571905.

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