Major Policy Issues

Read about the current policy issues most important to the genetics community, as well as Genetic Alliance's role in affecting these issues.

Policy Statements

Read both current and archived policy statements issued by Genetic Alliance.

Policy Bulletin

Read both the current and archived weekly bulletins, and subscribe to receive new bulletins by email!

Federal Legislation

Read federal legislation, in various stages, of note to the genetics community.

Action

Check out current calls to action as well as easily locate contact information for your Representative or Senators!

Guide to Policy Acronyms and Abbreviations

See a list of descriptions that demystifies acronyms and abbreviations you may come across when researching genetics-related legislation.

Letter to the Genetics Community

Genetic Alliance and Parent Project Muscular Dystrophy need your help. Our goal with all of you is to change the world of genetic diseases, ultimately improving the lives of individuals you love and represent. The issues we take on—from genetic testing to drug development to regulatory issues to policymaking—are complex and can be intimidating. We want to hear from you about how we can do a better job to help you understand these issues as well as the genetic disease landscape. Yesterday many new members entered the halls of in Congress; leadership in the House changed, along with many committees charged with advancing legislation that directly affects us all. It is time for us to speak with one voice.

Every year, thousands of individuals and organizations flock to Capitol Hill with the desire to have their voices heard. Genetic Alliance and Parent Project Muscular Dystrophy are among them. At the annual Genetics Day on the Hill, a couple hundred of us advocate for issues like public access to federally funded research, genetic testing oversight, and greater access to clinical trials. While we always feel productive after our day of advocacy, we know that our voices are just a few among hundreds of thousands. We always wonder how to make a bigger impact.

In addition to our in-person efforts, many of you are bombarded with sign-on letters accompanied by an “urgent” message. These action items require that you sift through details and analyze the potential effects on your organization and those you serve. However, few organizations have the resources—in terms of time and financial capacity—to engage the necessary guidance to adequately understand the complexity of issues in genetic disease.

We invite you for a discussion on how best to create a cohesive voice. Our legislative agendas, political views, and missions may be different, but we feel strongly that the biggest impact can be made if we work collectively. We have no agenda – we would like you to join us in setting it. Please let us know if you would like to discuss how we can all have a greater impact on policy. We will have a series of meetings via conference call so that all of you can participate. If you are interested, please email Sharon Terry at sterry@geneticalliance.org.

We look forward to hearing from you.

Genetic Alliance improves health through the authentic engagement of communities and individuals. In this, our 25^th year, we celebrate innovation on our journey toward novel partnerships, connected consumers and smart services.