Upcoming Events
Webinar: Children & Youth with Special Healthcare Needs in Healthy People 2020: A Consumer Perspective
May 16, 2013, 3pm – 4pm EDT
Healthy People 2020 contains almost 600 objectives for improving the health of all Americans, and 100 of those objectives relate to children and youth with special healthcare needs (CYSHCN). To highlight some of these objectives and envision how the objectives might influence CYSHCN as they mature into adults, 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 (MCHB) - which last year released Envision 2020, its strategic plan - to develop a family and consumer perspective on the national health promotion agenda and how it relates to CYSHCN and their families. By focusing on a small portion of the many community and organizational accomplishments related to children and youth with special healthcare needs (CYSHCN) and systems of care, we hope to generate discussions of the gaps that remain, as well as equip families and providers to better advocate and care for CYSHCN and their families. This webinar will present Envision 2020 as well as the Consumer Perspective document and demonstrate how Healthy People 2020 objectives can influence and provide direction for improving systems and services for individuals with special healthcare needs.
Webinar Series: What about Privacy and Progress in Whole Genome Sequencing?
The Presidential Commission for the Study of Bioethical Issues recently released a report entitled Privacy and Progress in Whole Genome Sequencing. 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.
Webinar Series: Registries for All
Registries for All (Reg4ALL) is an innovative new registry platform that aims to accelerate research and improve health for all. Reg4ALL users begin by answering simple and engaging questions about their health, and then set specific privacy settings that reflect exactly how confortable they are with sharing that information. Find out how Reg4ALL works – and how to make it work for you – with the Genetic Alliance webinar series. The webinars will be occur every other week from early May to early August, and will take place at 12pm EST. All webinars are free of charge and are also archived for later viewing. In general, the webinars will last one hour, including ample time for questions.
Powerful Patient Data: Genomics and Family Health History in Health IT
May 30-31 2013, Salt Lake City, Utah
Family health history and genetic/genomic information face similar barriers to use in patient care. Collection of this information can be sensitive and often impacts a patient's family members. Even when the information is collected, the data is rarely stored in a way that allows it to be used to its full potential. And yet, this information has significant potential for use in screening and diagnosis for an individual and their family. Genetic Alliance and Intermountain Healthcare are planning a summit with the goal of ensuring that this important information can be accessed and activated within the electronic medical record to drive better patient care.
