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This project is/was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number 1 -UH7MC30774-01-00, 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.
The WSRGN supports providers to implement telegenetics in their practice to increase access for families. Read more…..
Goal: Increase the number of families receiving services via telegenetics. Read more…..
The WSRGN is increasing access to genetic services for medically underserved populations by coordinating and funding outreach services in Guam, Hawaii, and Alaska. Read more…..
The Family Advocate Leaders Work Group includes family advocate leaders from the six western states and Guam. This project will have the family advocates, genetics specialists, and public health providers identify existing resources and develop new resources to help the Family to Family Health Information Centers and Family Voices’ staff refer families to the appropriate genetic resources and services. Read more…..
The WSRGN is developing a mentor/mentee program to expand the number of genetic counselors from ethnic minority backgrounds. The program will support current genetic counselors and students interested in becoming genetic counselors. Read more…
This project seeks to improve newborn management, and long-term follow-up of children with carnitine palmitoyl transferase deficiency, type 1 (CPT-1A) arctic variant. Educational aids are being developed to help families, primary care providers, and community leaders understand the treatment and management for newborns and children with CPT-1A arctic variant. Read more…
A previous project that involved members of the WSRGN created the base website and initial fact sheets related to information about conditions detected via newborn screening for http://www.newbornscreening.info. This website is now managed by the WSRGN, which provides ongoing maintenance of existing and development of new fact sheets. The fact sheets are in English and Spanish. We are currently working on additional features that include videos and interactive documents to help families learn about disorders detected by newborn screening. Read more…
HRSA funding of Regional Genetics Networks (RGNs) requires Networks to implement program evaluation that contributes to continuous quality improvement (CQI), and to provide data on HRSA program objectives and specified baseline data.
