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Meet and Greet at our Advocates Partnership Program!

Genetic Alliance proudly partners with a number of the nation’s leading health professional societies and organizations to offer an Advocates Partnership Program integrated into annual meetings across the country.

Click here for more information.

Join us for a Webinar Wednesday August 4th at 12:00 pm

Genetic Alliance is kicking off its first of three webinbars on Health IT!

Come participate when we as the question: Newborn Screening, Health IT and the Final Meaningful Use Rule: Where Do We Go From Here? Register Here

Genetic Alliance Celebrates the 45th Anniversary of Medicare

For more information, click here.

You can still experience the amazing 2010 Annual Conference: Advancing Novel Partnerships.

Reminisce with our twitter feed or browse our photo gallery.

Spotlight

Stay Connected

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

Where in the World is Genetic Alliance Staff?

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.

Joan A. Scott, M.S., C.G.C., Named Executive Director of NCHPEG

July 30, 2010 Genetic Alliance praises NCHPEG's decision to appoint Joan A. Scott, M.S., C.G.C., as Executive Director upon current Executive Director Joseph McInerney’s retirement. The changes are effective September 7, 2010. Click here for the press release

Myriad Genetics Appeals Ruling in Gene Patent Lawsuit

Myriad Genetics and other defendants in Association for Molecular Pathology v. USPTO filed an appeal with a district court in New York. Two months ago, the District Court for the Southern District of New York issued a ruling in the case that invalidated certain patents that Myriad Genetics holds on the BRCA1 and BRCA2 genes. The Court of Appeals for the Federal Circuit will now review the case.

Read the notice of appeal

Read Genetic Alliance’s position on gene patenting

Network

Meet Your Neighbors

The International Society of Nurses in Genetics, ISONG, is a global nursing specialty organization dedicated to fostering the scientific and professional growth of nurses in human genetics and genomics worldwide. The ISONG vision is Caring for people's genetic and genomic health. Each year ISONG holds an annual conference to update ISONG members and nurses in the local community on the latest genetics and genomics trends, research and education. This year, the annual ISONG conference will be held at the Fairmont Dallas, Dallas Texas, U.S.A. October 17 – 19, 2010.

www.isong.org

View all our "neighbors"

Click here to become a "neighbor"!

Policy

NCVHS Tackles Privacy and Medical Records

On June 15, the National Committee on Vital and Health Statistics (NCVHS), Subcommittee on Privacy, Confidentiality, and Security held a public meeting entitled “Sensitive Information in Medical Records.” The meeting sought to gather perspectives from national experts on issues to consider with regard to genetic, mental health, and child and adolescent information in electronic medical records. Sharon Terry, Genetic Alliance President & CEO, provided testimony on the topic of genetic information.

Learn more

FDA Public Hearing on Medical Products for Rare Diseases (Medical Products for Rare Diseases)

On Tuesday, June 29 and Wednesday, June 30, the FDA will hold a public meeting to address the review and regulation of medical products for the diagnosis, treatment, and/or management of rare diseases. The hearing will gather diverse perspectives on the development of therapies and diagnostics to inform the work of the FDA’s committee for rare diseases. Sharon Terry, President & CEO of Genetic Alliance, will provide testimony on June 29 at 2:40 pm ET. Her testimony will include the nearly 100 responses we received on our survey on the topic. Thanks for your input!

Learn more about the meeting

FDA to Host Meeting on LDTs

On July 19 and 20, the FDA will host a public meeting on the oversight of laboratory-developed tests (LDTs). The two-day meeting will take place in Rockville, MD. Sessions at the meeting will discuss patient considerations, laboratory challenges, direct-to-consumer marketing of testing, and education and outreach. Registration is free and open until July 12. The meeting will also be available via web telecast. The notice of the public meeting was accompanied by a request for comments, which the FDA will accept until August 15.

Access the FDA public meeting details

Newborn Screening
Creating Consumer Focused Models

Family Health History
A Community-Based Approach

ATCG
Access to Credible Genetics RN