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:

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.

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.

Discussion Lists - 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. Subscribe to Genetic Alliance lists.

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.

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.

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.

Newborn Screening Clearinghouse – The Clearinghouse, or NBSC, is a centralized access point to newborn screening information for parents and family members of newborns, health professionals, industry representatives, and the public. It connects the public to state and regional public health groups and facilitates data and resource sharing. The NBSC increases collaborations, through features such as the interactive blog, links to extensive information on NBS disorders and informational resources. The NBSC will soon take advantage of newly established and promising communications technologies that allow just-in-time and point-of-service access for parents and providers alike.

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.

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.