Advocacy, Education & Empowerment

Disease InfoSearch

# A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

What is this?

Organization Search

# A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

What is this?

Trust It or Trash It? Tool

The Trust It or Trash It? tool provides a guide to help you think critically about the quality of health information.

Three questions guide you through the process:

1) Who said it?
2) When did they say it?
3) How did they know?

Start using the Trust It or Trash It? tool. Are you developing educational materials? See the more in-depth Developer Version at www.trustortrash.org/developer.

Calling All Advocates!

We are now accepting applications for the Advocates Partnership Program at the American College of Medical Genetics (ACMG) Annual Clinical Genetics Meeting March 24-28 in Albuquerque, New Mexico.

Deadline for applications: Friday, February 5, 2010.

Applications will be accepted on a rolling basis, please review Advocates Partnership Program requirements and apply early!

ACMG Logo GA Logo

Spotlight

Gene Screen logo

Gene Screen: A Night of Film on Health and Genetics

Now open for submissions!

On July 15, 2010, after Genetics Day on the Hill, Genetic Alliance will host the 2nd Annual Gene Screen in conjunction with our Annual Conference, Advancing Novel Partnerships.

Check out our new video RFP to learn more about the call for submissions! All entries must be postmarked by May 31, 2010.

Click here for more information.

Federal Advisory Committee Recommends SCID for Universal Newborn Screening

In a historic vote on January 21, 2010, the Secretary's Advisory Committee for Heritable Disorders in Newborns and Children (ACHDNC) unanimously agreed to recommend the addition of Severe Combined Immunodeficiency (SCID) to the uniform newborn screening panel. The ACHDNC adopted a list of 29 recommended conditions in September 2005. Since that time, SCID is the first condition to be added to this list for inclusion into mandatory newborn screening conducted by state public health programs.

Read the full announcement now!

Does it Run in the Family? Online Tool Unveiled

www.doesitruninthefamily.org

Genetic Alliance launched a free online customizable family health history tool: the Does It Run In the Family? tool was developed so anyone can create personalized booklets about health for their families and communities.

Access the tool at
www.doesitruninthefamily.org!

Genetic Alliance Webinar

Hot Topics in Genetics and Advocacy
Childhood Screening in Public Health
February 10, 2010
12:00 pm - 1:00 pm ET

Strategies for Success
Wikis 101: Tips and Tricks for Contributing to WikiAdvocacy and WikiGenetics.
February 24, 2010
12:00 pm - 1:00 pm ET

Click here for more information.

Network

Meet Your Neighbors

The mission of the Periodic Paralysis Association is to: 1) provide individuals and families with access to science-based information; 2) stimulate interaction between the periodic paralysis community and professional disciplines; 3) provide the tools and a forum for open discussion of the diverse issues associated with these disorders; and 4) promote an increasing level of awareness of these disorders, leading to increased research, improved management guidelines, improved diagnostic protocols, and ultimately, their prevention and cure.

www.periodicparalysis.org

View all our 2009 "neighbors"

Policy

Do You Subscribe to the Weekly 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.

SACGHS Meeting February 4-5

The Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS) will hold its first meeting of 2010 on Thursday, February 4 and Friday, February 5 in Washington, DC. The charge of SACGHS is to provide recommendations on the application, use, and implications of genetic and genomic technologies in the healthcare system and society to the Secretary of the Department of Health and Human Services. The upcoming two-day meeting will focus on genetics education and training; genomic data sharing; and gene patents and licensing practices, among other topics.

Learn more, including how to submit public comments

What is Budget Reconciliation?

Kaiser Health News (KHN) released an overview report of the budget reconciliation process, a topic that continues to gain attention as a means to pass components of health reform. Use of the procedure would allow the Senate to pass health reform legislation by a simple 51-vote majority, as opposed to the 60 votes that would be required to stop a filibuster. The KHN article outlines the history of budget reconciliation, its advantages and disadvantages, and how the procedure would be implemented.

Learn more

To subscribe, simply email policy@geneticalliance.org.

Newborn Screening
Creating Consumer Focused Models

Family Health History
A Community-Based Approach

ATCG
Access to Credible Genetics RN