Monday, December 10, 2018
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Mission:
Idaho Parents Unlimited supports, empowers, educates and advocates to enhance the quality of life for Idahoans with disabilities and their families

The National Center for Hearing Assessment and Management serves as the National Resource Center for the implementation and improvement of comprehensive and effective Early Hearing Detection and Intervention (EHDI) systems. As a multidisciplinary Center, our goal is to ensure that all infants and toddlers with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention.

Click Here for more information. 


Western States Regional Genetics Network

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

Their activities aim to increases access to and reduce disparities in newborn screening and clinical genetic and genomic services for individuals with or at risk for heritable disorders. Click here for more information.


Newborn Screening in Idaho

Screening is required by State law:

The Idaho Legislature has instructed the Department of Health and Welfare to require that all babies born in Idaho receive two screening tests for Phenylketonuria (PKU) and other disorders that can result in mental retardation or other serious health problems. This procedure is called the “newborn screen,” or the “newborn blood spot screen.” This test should not be called “The PKU” or the “The PKU Test,” as Idaho now screens for more than 46 conditions. To learn more about the conditions tested for in Idaho, see the Idaho Practitioner's Manual.


Baby's First Test

Newborn screening is just one of many things that happen in the first few days after a baby is born. The information found at http://babysfirsttest.org/ can help prepare expecting parents for the newborn screening process and answer common questions, such as: What should I do Before Birth? What are the Screening Procedures? How should I respond to the Results? What are the Screening Outcomes? What happens to the Blood Samples?


From the National Oganaization for Rare Diseases - Genetic Testing 101 for Parents Webinar

Do you want to learn more about how genetic testing can be helpful in the diagnosis and management of rare diseases? These topics and more were covered in a NORD RareEDU webinar. In this recording, NORD welcomed Debra Regier, MD, Director of Genetic and Genomic Education at Children's National Hospital in Washington, DC, gives an overview of the different types of genetic tests, indications for their use, and their benefits and limitations. The recording also includes stories from patients and families who have had genetic testing and the impact it has had on their lives.

 

9/5/18