Genetic Alliance is proud to provide a range of resources and services that benefit both individuals and organizations. We welcome and encourage your involvement: listen to webinars, create and edit entries in WikiGenetics and WikiAdvocacy, participate in the Advocates Partnership Program, add your organization to Disease InfoSearch, and more.

Engage and Participate

Accelerating Translational Research

Genetic Alliance and Sage Bionetworks are accelerating drug development through community engagement and advocacy leadership in translational research. Our goal is to revolutionize the translational research paradigm through consumer activism. We do this by providing consumers and advocacy leaders with the tools and information needed to empower informed participation in research.

Advocates Listserv

This listserv is targeted for leaders of disease-specific organizations and their active members. Messages distributed through this list include information about events of interest, relevant legislative efforts, and weekly tips. Click here to subscribe or send an email to subscribe-advocates@listserv.galists.org.

Advocates Partnership Program

This program allows for a number of leaders from the advocacy community to attend the annual conferences of national organizations (such as American Society of Human Genetics, American College of Medical Genetics, and the National Society of Genetic Counselors) with partial scholarships that include waived registration fees and, occasionally, a moderate stipend. For more information, please contact Tanya Murza at tmurza@geneticalliance.org.

Annual Conference

Held once a year in the Washington, DC metro area, the Genetic Alliance Annual Conference brings together advocates, health professionals, corporate representatives, and government partners, creating an exciting networking and skill building opportunity. For more information, please contact Tanya Murza at tmurza@geneticalliance.org.

BabysFirstTest.org

The web tool is an objective resource for expecting and new parents to learn about newborn screening and is a place for families and health professionals to share their questions and experiences. As the nation's clearinghouse for newborn screening information, Baby's First Test has a central site that brings together stakeholders and provides easy access to newborn screening resources from community groups, government agencies and public organizations. The site also features condition lists, state information, family videos, and a Community Corner section, where visitors can learn about reliable sources of information pertaining to maternal and child health. For more information, please contact Natasha Bonhomme at nbonhomme@geneticalliance.org.

BioBank Discussion Listserv

This listserv has been created to discuss issues surrounding registries and biorepositories, including weekly tips developed for advocates creating or cultivating a registry or biobank. View past tips in our archive. Click here to subscribe or send an email to subscribe-biobank_discussion@listserv.galists.org.

Community (MemberForum) 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. Click here to subscribe or send an email to subscribe-communityforum@listserv.galists.org.

Disease InfoSearch

Disease InfoSearch is a constantly evolving online search tool and database of advocacy organizations and resources for genetic conditions. It includes support group information and links to disease-specific materials that are up-to-date, accessible, and vetted for quality information. For more information, please contact us at info@geneticalliance.org.

Does It Run In the Family?

The customizable Does It Run In the Family? online tool helps users create customized family health history (FHH) materials for their family, organization, or community. The tool allows users to customize two booklets (“A Guide to Family Health History” and “A Guide for Understanding Genetics and Health”) that together help people collect, organize, and understand their FHH. For more information, please contact Vaughn Edelson at vedelson@geneticalliance.org.

Genetic Alliance Webinars

Genetic Alliance offers information and a discussion framework to leaders and advocates in three series: Strategies for Success, Meet Your Neighbors, and Hot Topics. We hold at least one webinar in each series per month. View upcoming sessions. For more information, please contact Tanya Murza at tmurza@geneticalliance.org.

Resource Repository

This electronic repository for documents and audio and video files covers all aspects of organizational development: fundraising, incorporation, conference planning, volunteer recruitment, and more. Features include the ability to track new content tailored to your interests; view the most recently uploaded and most often downloaded content; and easily submit your own material. See what is in the Resource Repository.

Trust It or Trash It?

This online tool serves two purposes: to encourage critical thinking as people encounter health information and to add to the existing volume of high quality genetics materials. There are two versions of the tool, one for people who are developing educational materials and one for people assessing the quality of health information. Would you like this tool on your website? Contact Amelia Chappelle: achappelle@geneticalliance.org.

WikiAdvocacy

A compilation of the wisdom of the advocacy community, WikiAdvocacy contains regular updates from key leaders, and advisory and editorial board oversight. Members of the advocacy community continually add and refine the tips and tools offered through this resource. For more information, please contact us at info@geneticalliance.org

WikiGenetics

WikiGenetics is an open source, user generated encyclopedia for the public. It is a valuable resource for anyone searching for genetics information, including people with no science background. Anyone can contribute and edit information. To ensure credibility, WikiGenetics requires references for all contributions. Advisory and editorial boards comprised of experts in genetics are in place to review all additions to the site. For more information, please contact us at info@geneticalliance.org.