Advocacy, Education & Empowerment

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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

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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

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Save the Date!

Save the date for next year's Annual Conference:

25 Years of Innovation, June 24th – 26th, 2011

at the Bethesda North Mariott Hotel & Conference Center

Disease InfoSearch

Now with over 7,000 conditions! Make sure your organization is listed.

American Society of Human Genetics (ASHG) Annual Meeting

Attend from November 2-6, 2010, for a chance to participate in exclusive meetings with leaders in the field of genetic research to discuss how families and researchers can better partner to improve access to services and treatments.

Please contact Andria Cornell for more information: acornell@geneticalliance.org

Trivia!

How many babies are screened each year for 29 heritable diseases?

ashg

A) 40

B) 4,000

C) 4,000,000 +

Spotlight

Stay Connected

Follow us and stay up to date with everything we are doing!

Where in the World is Genetic Alliance Staff?

August 30:

Sharon Terry participated in a Health IT Standards Committee meeting.

August 19 - 20:

Liz Horn spoke at IQPC's 3rd Biobanking Conference on Thursday about Connecting Biorepositories and Advancing Discovery. The conference addressed major challenges faced by both start-up and established biorepositories.

August 6th:

Natasha Bonhomme attended a NYMAC (New York Mid Atlantic Consortium) Emergency Preparedness Seminar and Table-Top Drill in Baltimore, MD.

July 29th:

Natasha Bonhomme gave public comment on the importance of Newborn Screening at the HIT Policy Meaningful Use Work Group. Read the comments here.

Sharon Terry gave testimony on the Federal Research Public Access Act.

Genetic Alliance Webinar

Miss the Registry and BioBank Question and Answer Session on September 1st?

No problem!

Click here
to get the session material.

Click here to access
past webinar recordings.

Network

Meet Your Neighbors

The CHARGE Syndrome Foundation, Inc. provides support to individuals with CHARGE syndrome and their families. The CHARGE Syndrome Foundation gathers, develops, maintains, and distributes information about CHARGE syndrome to all of its roughly 400 members. The CHARGE Syndrome Foundation promotes awareness and research regarding identification of CHARGE Syndrome, its cause and its management.

View all our "neighbors"

Click here to become a "neighbor"!

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.

Schwarzenegger Spearheads
“Telehealth” System

On Wednesday, August 18, Governor Schwarzenegger and the United States Chief Technology Officer Aneesh Chopra announced the launch of the California Telehealth Network (CTN), the nation’s largest telehealth center, which intends to connect hundreds of patients, hospitals, and providers electronically. At the announcement of the program, Governor Schwarzenegger said, “Through a simple broadband link, this state-of-the-art system will save lives by instantly connecting people from across the state, including underserved and rural areas, with the best and brightest doctors. The California Telehealth Network marks the beginning of a new digital highway that will fundamentally change the future of how health care is provided.”

Read or watch the Governor's entire speech

We want your feedback!

Participate in a quick survey to help us make the policy bulletin work for you.

Healthcare Reform:
Clinical Trials

Genetic Alliance is dedicated to providing information on how the Patient Protection and Affordable Care Act affects the genetics community. There is no question that clinical trial participation is vital to advancing the development of crucial treatments and therapies. Clinical trials can also be a means by which patients, if eligible, can access new treatments. However, patients often encounter difficulties in obtaining coverage or reimbursement for the treatments they receive as part of participating in a clinical trial. In 2014, the Patient Protection and Affordable Care Act will require insurance companies to cover costs for those they insure that participate in phase I through IV of clinical trials.