Programs for Individuals with Genetic Conditions and Their Families: One of the Newest Programs Led by Genetic Alliance Is the National Genetics Education and Consumer Network (NGECN). the Goal Is to Improve Consumers'-Individuals with Genetic Conditions and Their Families-Access to and Knowledge about Genetic Services

By Romelczyk, Sharon; Koren, Rachel G. | The Exceptional Parent, September 2013 | Go to article overview

Programs for Individuals with Genetic Conditions and Their Families: One of the Newest Programs Led by Genetic Alliance Is the National Genetics Education and Consumer Network (NGECN). the Goal Is to Improve Consumers'-Individuals with Genetic Conditions and Their Families-Access to and Knowledge about Genetic Services


Romelczyk, Sharon, Koren, Rachel G., The Exceptional Parent


As a parent of a child with special healthcare needs, you know that finding the right resources, services, and care can make a big difference in the health of your family. The vast amount of information that is available makes it hard for individuals and families to feel confident about the credibility and quality of information they find. Genetic Alliance aims to provide quality information and resources for individuals and families on health and genetics, including what services are available and how to access the services and support they need. We rely on families and individuals affected by genetic conditions, who are often experts on their own health and healthcare experiences, to help us create quality resources.

Genetic Alliance engages individuals, families, and communities in the work that we do so that we better understand what it is--information, resources, and/or support--that will improve health and access to quality services. These days the importance of "being your own advocate" is mentioned regularly; especially when it refers to making sure your healthcare fits your specific needs. Genetic Alliance takes that concept to the next level, first by identifying needs of individuals and then engaging those individuals in the design and testing of resources to address their needs.

One of the newest programs led by Genetic Alliance is the National Genetics Education and Consumer Network (NGECN). NGECN is a three-year initiative funded by the Health Resources Services Administration (HRSA) to create a network of partnerships and accessible tools. Our goal is to improve consumers' (individuals with genetic conditions and their families) access to and knowledge about genetic services.

NETWORK TO EMPOWER AND ENGAGE CONSUMERS

The goal of NGECN is to connect with parents and individuals with conditions themselves, or consumers, across the nation to address their needs around genetics and genetics services. Consumer and parent perspectives are extremely important to the success of the programs developed for individuals with genetic conditions and their families. We are working with self- and/or family-advocates from across the nation to learn about their work with regional genetics programs called the Regional Genetics Collaboratives (RCs). NGECN relies on direct guidance from a smaller group of advocates that represent each of the regions across the United States as part of their Consumer Advisory Group. Their perspective and guidance helps us ensure the tools and products we create are accessible and fit the needs of individuals and parents. We encourage consumers to become involved with the programs in their region to provide their perspective and expertise. This is not only an important reminder of who can benefit from the programs and how best to serve their needs, but we've also found that the consumers themselves become empowered to share their story and teach from their experiences.

Scott shares his story about how he got involved with the RCs and NGECN and the ways he has been able to share his experience to benefit others:

"Even though my heart has a void I've found strength in helping others. Three years ago after the loss of my son and best buddy, Evan, I thought my heart would never heal, each day my soul became a bit weaker until last year.

I was co-presenting at a conference in Lansing, Michigan. The insurance training was for families with sick children; I was the expert parent. After the Region 4 Genetics Collaborative meeting, the Parent Coordinator came up and said, 'Hey Scott, your story is so powerful. Would you be interested in joining our collaborative?' Even though other doors have opened up, this opportunity seemed like a perfect fit. I'm also a partner with the National Genetics Education and Consumer Network.

Evan had Noonan syndrome and I'm a father of three who never dreamed about becoming a medical expert; our family tradition is carpentry. …

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Programs for Individuals with Genetic Conditions and Their Families: One of the Newest Programs Led by Genetic Alliance Is the National Genetics Education and Consumer Network (NGECN). the Goal Is to Improve Consumers'-Individuals with Genetic Conditions and Their Families-Access to and Knowledge about Genetic Services
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