Genetic Alliance Resources and Services

Genetic Alliance Resources and Services

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.

Individuals and organizations can utilize our resources to:
Stay Informed
Engage and Participate

Some of our resources are tailored specifically for organizations:
Organization Resources

We also have a Community Job Board where organizations can post job openings and individuals can find new and exciting opportunities for employment.

Stay informed:

Weekly Bulletin – This weekly update to our Announcements listserv features news about upcoming events, spotlights organizations, and highlights legislation before Congress. Email bulletin@geneticalliance.org to submit your event to the Weekly Bulletin. To subscribe to the Weekly Bulletin, send an email to info@geneticalliance.org.

Policy Bulletin – Genetic Alliance participates in international, federal, and regional policy news and utilizes our rich network of thousands of organizations to provide you with the most up-to-date information on genetics and health public policy. The Weekly Policy Bulletin puts legislative updates, Congressional and regulatory agency activity, newly released publications and reports, and opportunities for engagement in the policymaking process at your fingertips. To subscribe, simply email policy@geneticalliance.org.

Registry and Biorepository Bulletin – Genetic Alliance BioBank sends a monthly update to keep you informed of developments in the field of registries and biorepositories. This newsletter highlights relevant funding announcements, training opportunities, scientific meetings, and recent updates from the literature. To subscribe to the Registry and Biorepository Bulletin, send an email to lhorn@geneticalliance.org.

Advocacy in Genetics – This quarterly e-newsletter keeps our network informed of Genetic Alliance activity in the worlds of genetics, policy, and advocacy. View current and past issues.

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.

Organization Resources:

Phone and in-person guidance – Genetic Alliance uses a step-by-step plan for establishing programs, which range form an informal support system to an incorporated nonprofit organization, for individuals and families with a specific condition. Contact Amelia Chappelle for more information: achappelle@geneticalliance.org.

Listserv Hosting – Genetic Alliance can create a unique, private listserv for an organization or group for an annual fee of $100 per list. Advocacy organization leaders are responsible for moderating their own lists and managing individual members.

Website Development and Hosting – Genetic Alliance’s website program allows advocates to use an easy to operate system for displaying content, creating calendars and bulletin boards, etc.

Community Job Board

Developed by Accella
Graphic Design by
Melissa Allen Design
4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008-2369
Tel: 202.966.5557 Fax: 202.966.8553
info@geneticalliance.org