Resource eBlast January 2019

Sharing Resources for Families of Children with Special Health Care Needs

Have you ever wondered about genetic services? What are they? How do you know if they are a good option for your child? How do you get newborn screening results? How do you find genetic services near you?

Did you know that there is a National Coordinating Center for the 7 national regional genetic networks dedicated to improving access to quality genetic services for medically undeserved populations?

Why is there a National Coordinating Center and regional networks? As you will read, the Maternal and Child Health Bureau saw the need to not only improve access to services, but also promote education and partnership, and ensure genetic medicine translates into public health and health care services.

If the Coordinating Center is the big umbrella covering the U.S. with support, then the regional genetic networks are the ribs or arms of the umbrella that reach out directly to you! Click on the interactive map to link to your regional network and connect directly with staff and families who can help you navigate genetic services and so much more.

As the mission indicates, the Coordinating Center and all of the regional networks are committed to ongoing efforts to improve access for medically underserved populations… that means CYSHCN and their families! As such, there is arm of the umbrella dedicated to education and family support.

Take a look at the latest webinar from the National Genetics Education and Family Support Center, “Highlighting Partnerships Between Family-Led Organizations and the Regional Genetics Network,” for a discussion on the benefits and importance of cross-collaboration between Regional Genetics Networks and family-led organizations. During this webinar participants share successful projects and information on how to undertake these partnerships in other regions.