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Genetic Alliance President Joins Prestigious Fellow Program for Global Organization

Sharon Terry, president and chief executive officer of Genetic Alliance, was just announced as an Ashoka Fellow, a distinguished lifelong position attained only after a rigorous selection process. Ashoka is the largest association of leading social entrepreneurs in the world that strives to enable the world’s citizens to think and act as changemakers.

For more information, read the full announcement.

2010 Genetic Alliance Annual Conference

2010 Genetic Annual Conference
Advancing Novel Partnerships
July 15-18

The Genetic Alliance Annual Conference is consistently inspirational and enables partnership among all stakeholders: advocates and community leaders, health and industry professionals, policymakers and academicians. We hope you will join us for another conference journey.

Check out our upcoming events for more information.

Participate in a Focus Group with Genetic Alliance!

We would like your ideas on critical thinking and the components of quality and credible resources. Your feedback will help us with a project that aims to increase public access to credible genetics resources. We will provide pizza for focus group participants.

Where: Genetic Alliance offices, at 4301 Connecticut Ave. NW, Suite 404, Washington, DC 20008

When: Wednesday, March 31 from 6:00pm-7:15pm

RSVP: To Molly Brenner at mbrenner@geneticalliance.org. Spots are limited, so RSVP today!

Disease-Specific Organizations Invited to Apply for $20,000 BioBank Grant

Genetic Alliance is offering new grant to a disease-specific organization to fund its entry into the Genetic Alliance BioBank. The BioBank is an advocacy-owned and controlled repository for biological samples and clinical data. Genetic Alliance staff conceived of the grant to help a disease-specific organization further its understanding and treatment of that disease using the resources available through the BioBank. Read more.

Genetic Alliance Webinar

Hot Topics in Genetics and Advocacy
How and Why Genes are Patentable.
April 1, 2010
12:00 pm - 1:00 pm ET

Hot Topics in Genetics and Advocacy
Translating Genomic Research into Public Health Applications.
April 9, 2010
12:00 pm - 1:00 pm ET

Hot Topics in Genetics and Advocacy
Are Preconception Carrier Screening Programs Empowering or Devaluing?.

Click here for more information.

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.

Does it Run in the Family?
Online Tool

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.familyhealthhistory.org!

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.

Network

Meet Your Neighbors

Shire HGT pursues opportunities on behalf of patients and families facing rare diseases as Fabry disease, Hunter syndrome, Gaucher disease, hereditary angioedema, and metachromatic leukodystrophy. Shire HGT started as TKT therapeautics and in 2005 Shire Pharmaceuticals, a leading biopharmaceutical compay, purchased TKT and Shire Human Genetic Therapies was created.

www.bravecommunity.com

View all our 2009 "neighbors"

Policy

New House Earmark Policy

On March 10, the House Appropriations Committee banned all earmark requests directed toward for-profit entities. Appropriations Chair David Obey (D-WI) and incoming Defense Appropriations Subcommittee Chair Norm Dicks (D-WA) announced that businesses will still be able to apply for earmarks through a competitive process, but they will apply to the Defense Department, not Congress, to ensure earmarks are awarded on a merit basis only.

View the House Appropriations Committee press release

View Sharon Terry's March 2009 Testimony

$162 Million in Health IT Awards from HHS

HHS Secretary Kathleen Sebelius announced on March 15 the remaining $162 million in awards to improve the secure exchange of electronic health records between hospitals and healthcare providers within and among states. The funds are authorized through the HITECH Act, the health information technology provisions of the American Recovery and Reinvestment Act of 2009, to build infrastructure for the adoption and meaningful use of health information technology. The HHS awards will be directed to 16 states and state designated entities, recognizing the leading role states will have in the implementation of a widespread health IT system.

Access the HHS press release.

Rare Diseases Ranked In Top 10 Ideas for Change

On Monday, March 15, Change.org announced that Rare Disease, under an idea entitled "25 Million+, It's Time to Care About Rare Disease", is among the ten most popular ideas for change in America. Rare diseases affect in total nearly 30 million people in the United States, 15 million of whom have no treatment for their condition. The 10 most popular ideas for change will be presented to the Obama Administration and will form the basis of national campaigns across the country.

View the Change.org announcement

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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