From: Elizabeth Stark [mailto:[log in to unmask]]
Sent: Wednesday, September 26, 2012 2:02 PM
Subject: Genetic Alliance Launches 2013 Consumer Task Force on Newborn Screening

FOR IMMEDIATE RELEASE September 26, 2012

Contact: Elizabeth Stark, MS, CGC 202-966-5557 x207 [log in to unmask]

Genetic Alliance Launches 2013 Consumer Task Force on Newborn Screening Request for Applications Now Open WASHINGTON, DC – September 26, 2012 – Genetic Alliance released a Request for Applications for the 2013 Consumer Task Force on Newborn Screening today and is currently accepting applications. Individuals with an interest in newborn screening, particularly parents of children who have been affected by newborn screening, are eligible to apply. The Consumer Task Force on Newborn Screening was created to engage a range of stakeholders with an interest in newborn screening policies, activities, and current events. The 2013 program will build on the success of the 2012 program and will once again include training and project implementation components. Members of the Task Force will be trained in issues relevant to newborn screening and will create projects targeting groups who typically are in need of engagement regarding newborn screening. Members will receive a $1,500 stipend that is applied to the implementation of their projects. Baby’s First Test (www.BabysFirstTest.org), the nation’s educational resource center for newborn screening, will provide a robust platform for these projects. After serving on the Task Force, members will be equipped with the skills and knowledge to continue work on newborn screening programs or other maternal and child health-related issues related to newborn screening. No previous newborn screening experience is necessary to apply, only a drive to learn about, and positively impact, the newborn screening system. Upon completion of Task Force activities, members will receive a certificate acknowledging the training they received. To learn more about our current Consumer Task Force and to find the full Request for Applications, please visit www.BabysFirstTest.org/newborn-screening/consumer-task-force. Applications are due November 2, 2012, at 6 PM EST. An informational webinar will be held October 9, 2012 from 12:00-1:00pm EST, with questions to be posted online October 16, 2012. Natasha Bonhomme, project director of Baby’s First Test, said, “After a successful year with the 2012 Consumer Task Force, we are excited to offer this opportunity to another group of individuals. The Consumer Task Force program is a vital tool to support and expand our efforts to increase newborn screening awareness and education”. ### About Genetic Alliance Genetic Alliance improves health through the authentic engagement of individuals, families, and communities. Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and works to connect consumers to the smart services they need to make informed decisions about their health and healthcare. Genetic Alliance’s network includes more than 1,000 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations. For more information about Genetic Alliance, visit http://www.geneticalliance.org. About Baby’s First Test Baby’s First Test is the nation's educational resource center for newborn screening. It informs and empowers families and healthcare providers throughout the newborn screening experience. By increasing awareness, Baby’s First Test offers millions of newborns and their families a chance at a healthy start. This project is made possible by Grant Number U36MC16509, Quality Assessment of the Newborn Screening System. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Health Resources and Services Administration, or HHS. To learn more visit http://www.BabysFirstTest.org