In August 2007, Genetic Alliance established the Consumer Task Force on Newborn Screening (CTF-NBS). The CTF-NBS includes parents who are experienced in various aspects of the NBS system, in addition to those who are just starting to navigate these issues. The CTF-NBS will ensure the integration of consumer perspectives in the planning and implementation of the Consumer Focused Newborn Screening projects. For more information, click here to read the press release.

Recent Activities:

On September 25, 2009, the CTF-NBS presented comments to the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children on a vision for long-term follow-up care in newborn screening. In its statement, the CTF-NBS chose to examine the roles of players in the newborn screening system, specifically those of parents and families; key features of a family-centered solution that addresses the psychosocial impact of these conditions on the family unit; the changing focus of long-term follow-up, from data liquidity, to treatment, to information; and integration of long-term follow-up into the health reform dialogue. Access the complete statement.

Members:

Deborah Heine
Claire Altman Heine Foundation (www.clairealtmanheinefoundation.org)

Roberta McMahon
Consumer Advocate

Victoria Odesina
Citizens for Quality Sickle Cell Care (http://cqscc.org)

Tina Romero
Consumer Advocate

Sharon Terry
PXE International (www.pxe.org)

Jacque Waggoner
Hunter’s Hope Foundation (www.huntershope.org)

Emily Waldman
Consumer Advocate

Andrea Williams
Children’s Sickle Cell Foundation (www.cscfkids.org)