The Western States Genetic Services Collaborative is a federally-funded, multi-state project that seeks to improve individual and family health throughout the life course. The participating states and territory are: Alaska, California, Guam, Hawaii, Idaho, Oregon, and Washington.

Our activities aim to increase access to and reduce disparities in newborn screening and clinical genetic and genomic services for individuals with or at risk for heritable disorders.

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under Genetic Services Project, grant number H46MC24091-03-00, for $600,000. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

DOCUMENTS FOR COLLABORATORS

Wiki Updates (Act Now)

The Secretary of Health and Human Services recently added MPS I to the Recommended Uniform Screening Panel (RUSP), and the Association of Public Health Laboratories (APHL) is supporting the implementation of screening for this condition in state public health programs. As a partner in this program, Baby’s First Test is seeking advocates for mucopolysaccharoidosis type 1 (MPS I), either patients with the condition or their family members. These individuals would serve on an MPS I workgroup in partnership with other participants to accomplish the following objectives:

  • Form a comprehensive picture of existing, available resources about MPS I
  • Identify gaps in the current body of educational tools and materials
  • Inform the process of educating healthcare providers and families about MPS I
  • Determine optimal channels of disseminating information

The MPS I Education work group will meet via phone or webinar 6 times a year/ bimonthly for 1 hour. The expected time commitment from members also includes four additional hours for various work group-related tasks, including reviewing and editing educational materials. For participants’ time and contributions, we will compensate them with a $500 stipend. Initial calls are planned to begin this month, February 2017.

If you are interested, please contact Amelia Mulford at amulford@geneticalliance.org.


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Genetics and Newborn Screening Updates