Background/Project Overview:

Beginning in 2004, Health Resources and Services Administration (HRSA) created a regionalized infrastructure (The Regional Genetic and Newborn Screening Service Collaboratives or RCs) that was designed to improve access to appropriate genetic services by enhancing communication and cooperation between specialists, primary care providers, consumers, and public health. In June 2012, the American College of Medical Genetics (ACMG) was awarded a grant entitled, National Coordinating Center for the Regional Genetic Service Collaboratives, from HRSA to produce a National Coordinating Center (NCC) to provide support and resources to the seven RCs by:

• Implementing and disseminating projects of interregional and national significance
• Developing educational materials and management guidelines at the national level, and
• Identifying policy issues or other barriers to improving access, utilization, and quality of genetics services

As a subcontract within the NCC initiative, Genetic Alliance will create and encourage collaboration among a National Genetics Education and Consumer Network (NGECN) in partnership with Parent to Parent USA and Family Voices. The goal of NGECN is to produce and sustain a collaborative network of partnerships and accessible tools that improve consumers’ access to and knowledge about genetic services and to enhance the quality of those services.

Recent Progress:

• Working with Family Voices (FV), Parent to Parent (P2P), and the Regional Collaboratives (RCs) to create a resource guide with advocacy training resources and capacity building tools 
• Providing support to Regional Collaboratives on current and future consumer engagement and public education activities
• Reaching out to partner groups to build education and consumer network 
• Continually updating information and support group listings in Disease InfoSearch through regular outreach to disease-specific groups

For more information on the National Genetics Education and Consumer Network, contact us at sromelczyk@geneticalliance.org.

Resources:

Disease InfoSearch
Disease InfoSearch provides information about diseases and their related support and advocacy networks. The site's goal is to serve as a credible resource for people to learn more about the signs and symptoms of conditions, the latest research, and how to access support.

Genesinlife
Genes in Life provides general information as well as information about specific genetic conditions and how genes impact everyday life. This easy to use website provides information on how genetics affect you, your family, why you should talk to your healthcare providers about genetics, and how to get involved in genetics research.

Reg4All
Reg4ALL is a community of people storing and sharing information about themselves and their health in order to find ways to accelerate research and improve health for all.

Additional Resources:

The Affordable Care Act and Children with Special Health Care Needs

The Patient Protection and Affordable Care Act was signed into law on March 23, 2010. The law is designed to increase coverage, improve benefits, and provide important new insurance protections for all Americans.  Many of the law's provisions will impact children, including children and youth with special health care needs.  Below are some resources on the Affordable Care Act and children with special health care needs. 

Catalyst Center
This federally-funded center is dedicated to improving health care coverage and financing for children and youth with special health care needs. The center has developed several presentations and fact sheets about the Affordable Care Act

The Health Care Law and You
On this government site, you can find the full law, and state-specific information about the law.

Health Care and You
This site reviews portions of the law currently in effect, and portions of the law that will go into effect in the future. 

This project is funded by the Health Resource and Service Administration (HRSA), Grant no. U22MC04100, National Coordinating Center for the Regional Genetic Services Collaboratives. The content of this webpage is solely the responsibility of Genetic Alliance and does not necessarily represent the official views of HRSA.