Advocacy, Education & Empowerment

First Feature

Save the Date: May 30-31, Powerful Patient Data: Genomics and FHH in Health

Genetic Alliance and Intermountain Healthcare are excited to announce a two-day summit to take place in Salt Lake City, Utah on May 30-31, 2013.

Learn more and register here.

Sharon_foratv

Reg4All: A New System for Connecting Health Information

Watch Sharon Terry present Reg4ALL on fora.tv and tell us what you think!

Webinar Series

Find out how Reg4ALL works – and how to make it work for you – with the Genetic Alliance webinar series.

Next Webinar: Wednesday, May 29th @ 12:00pm : Learn how advocacy organizations can create and manage their own registries.

Learn more and register here!

Rare Disease Book

Need Some New Reading Material?

Genetic Alliance publications are now on the NCBI Bookshelf!

Access more of our publications here.

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

Everyone in the genetic disorder community knows that it takes power to fight a genetic disease. Twin sisters with cystic fibrosis and double lung transplant recipients Ana Stenzel and Isa Stenzel Byrnes show what power can do in the documentary film “The Power Of Two.” Called “compelling” and “poetic” by the Wall Street Journal, and an “inspiring triumph” by Golden Globe® nominated actor Jack Black, this winner of ten film festival awards has entertained, educated and inspired audiences globally.

Starting May 22, “The Power Of Two” is coming to TV across the US!

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