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# 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.

Genetic Alliance Webinar

Meet Your Neighbors
Mountain States Genetics Regional Collaborative Center (MSGRCC)
January 13, 2010 12:00pm - 1:00pm ET

The Mountain States Genetics Regional Collaborative Center (MSGRCC) is a HRSA funded regional project seeking to ensure that individuals affected with or at risk for heritable disorders have access to quality care and appropriate genetic expertise and information in the context of a medical home.

Click here for more information

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!

Future of Newborn Screening Envisioned:
Proceedings Now Viewable Online

More than 200 health professionals, family members, and others participated in the recent Newborn Screening Summit: Envisioning a Future for Newborn Screening to discuss how long-standing state public health programs can evolve to keep up with new technology, societal and governmental trends, and medical advances.

Read the full announcement now.

View the agenda and materials.

Network

Meet Your Neighbors

BraveCommunity.com is an online community and resource for patients, families, and health care professionals seeking more information about: [bulleted list] Fabry Disease, Gaucher Disease, Hereditary Angieodema (HAE), Hunter Syndrome (MPS II), Metachromatic Leukodystrophy (MLD), and Sanfilippo Type A (MPS IIIA), living with rare diseases, clinical trials. The Web site is developed and maintained by Shire Human Genetic Therapies (HGT).

www.bravecommunity.com

View all our 2009 "neighbors"

Policy

ACHDNC 20th Meeting January 21-22

The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) will hold its twentieth meeting January 21-22 in Washington, DC. The meeting will include: 1) the nomination of Alpha-Thalassemia (Hemoglobin H); 2) an update on the implementation of the National Newborn Screening Clearinghouse; 3) presentations on the Advisory Committee's subcommittees; and 4) a discussion of the Advisory Committee's briefing paper.

Learn more and register for the meeting

Access information about the National Newborn Screening Clearinghouse

EHR Incentive Regulations Released

On December 30, the Centers for Medicare & Medicaid Services (CMS) and the Office of the National Coordinator (ONC) for Health Information Technology (HIT) issued regulations that serve as the foundation for improving healthcare quality, efficiency, and safety through HIT. The regulations implement the electronic health record (EHR) incentive programs enacted under the HITECH Act of the American Recovery and Reinvestment Act of 2009.

Access the CMS proposed rule

Access the ONC interim final rule

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.

Newborn Screening
Creating Consumer Focused Models

Family Health History
A Community-Based Approach

ATCG
Access to Credible Genetics RN

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