Advocacy, Education & Empowerment

First Feature

Frustrated By the Shutdown?

The sudden halt in government services has serious consequences for health.

Individuals and Organizations can sign-on to the Genetic Alliance letter addressed to our congressional leaders.

Sign on here!

BFT

Need Some New Reading Material?

Genetic Alliance publications are now on the NCBI Bookshelf!

Access our publications here.

Family Health History

Have you Discovered your Family Health History?

Explore all the ways genetics is a part of life at www.genesinlife.org

Spotlight

Children and Youth with Special Healthcare Needs in Healthy People 2020

Genetic Alliance and Family Voices collaborated with the Division of Services for Children with Special Health Needs in the Health Resources and Services Administration’s Maternal and Child Health Bureau to create a family and consumer perspective on the national health promotion agenda and how it relates to children and youth with special healthcare needs and their families. By releasing this document we hope to generate discussions of the gaps that remain, as well as equip families and providers to better advocate and care for children and youth with special healthcare needs and their families.

Network

Meet Your Neighbors

Located on the NIH campus, the National Library of Medicine is a biomedical library and the center for information innovation. It is a source of a wealth of knowledge on various subjects and topics that can be used to advance access to health information across communities, and support research and bioinformatic training.

Become a "neighbor"!
View our neighbor archive

Policy

Newborn Screening Saves Lives Reauthorization Act

On Wednesday March 20, 2013 Representatives Lucille Roybal-Allard (D-CA) and Mike Simpson (R-ID) introduced H.R. 2181,Newborn Screening Saves Lives Reauthorization Act legislation to ensure that children born in the US continue to receive comprehensive and effective screenings. The Newborn Screening Saves Lives Reauthorization Act will continue a number of national programs in place to support and improve newborn screening including: systematic evidence-based and peer-reviewed process of determining the federal Recommended Uniform Screening Panel, federal programs that provide assistance to states to improve and expand their newborn screening programs, quality assurance and surveillance efforts, and support parent and provider education through the Clearinghouse of Newborn Screening Information known as Baby's First Test.

Registries For ALL

CEO Sharon F. Terry introducesReg4ALL, a community of people storing and sharing information about themselves and their health in order to accelerate research and improve health. Reg4ALL allows communities to engage in biomedical research. Based on the privacy preferences and individual sets, researchers can access an individual’s health data – allowing all of us to contribute to the creation of medical breakthroughs and spark health innovation for all. Genetic Alliance has partnered with Private Access, which has a vision for a healthcare community that supports every individual's unique need for privacy and care. PA has vested interest in ensuring that individuals have access to their health information and can choose who can see it and can use it. The mechanism of the consent form is overburden – let's move to fair information practice.

Helping Provide Better Informed Decisions

The Patient-Centered Outcomes Research Instituteis authorized by Congress to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORI’s research is intended to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options.

What about Privacy and Progress in Whole Genome Sequencing?
A year-long webinar series

The Presidential Commission for the Study of Bioethical Issues recently released a report entitled Privacy and Progress in Whole Genome Sequencing . Genetic Alliance offers this series of monthly webinars, on the second Tuesday of each month at noon, beginning in February 2013 and ending in December. This year-long series will use the report structure as the basis for discussion. We’ll explore each recommendation, look for practical applications, and consider what else might be needed to realize the fruit of whole genome sequencing and respect privacy. All webinars are free of charge and are also archived for later viewing.

Learn More and Register