Category Archives: Tools & Resources for Families

Resource E-blast Jan 2019

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Resource eBlast January 2019

Sharing Resources for Families of Children with Special Health Care Needs

This month our National Team at Family Voices put together our Resource E-blast and its all about Genetics! Here are some of the articles and links to get more information!

National Coordinating Center for the Regional Genetics Network

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?

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.

Find Your Regional Network: An Interactive Map

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.

NCC Mission: To Improve Access

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.

Learn More: A Webinar

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.

Interesting Read E-parent Newsletter

At Family Voices Colorado, we strive to find the best resources and relevant information for our families. E-parent is a great organization and they put out a weekly newsletter. Last weeks newsletter had some very interesting articles that we wanted to share. They talk about your rights as parent in regards to the medical care of your child. There is also an article that touches the topic of medical and scientific research from the Tourette Association. The 3rd article talks about some facts and myths about Autism Spectrum Disorder. Click here to read the full articles.