The National Genetics Education and Consumer Network (NGECN) is a two-year initiative (June 2015- May 2017) led by an organization called Genetic Alliance
in partnership with the Regional Collaboratives, Family Voices
, and Parent to Parent USA
. The focus of NGECN is to build a network of partners and develop accessible tools to improve access to and the quality of genetic services. NGECN focuses on two different project areas: consumer engagement and public education.
NGECN aims to support meaningful participation of individuals with genetic conditions and their families (we use the term consumers) in both the Regional Genetics Collaboratives and in other programs focused on genetics and health to encourage patient-centered outcomes. All 7 regions have active participation from consumers, either in the form of a dedicated workgroup or as individual advocates that participate on RC workgroups. NGECN hosts webinars and creates materials on topics of interest to the regions to support recruitment, engagement, and participation of consumers. NGECN has a Program Manager and a Program Director who both work closely with the staff of NCC and the RCs. The Program Manager attends all of the monthly NCC/RC workgroup calls and works in various ways with the RC family workgroups.
NGECN has a Consumer Advisory Group made up of at least one representative from each RC that either has a genetic condition or is a family member of a person with a genetic condition. Gaining perspective from individuals who have experienced getting a genetic diagnosis and/or using genetic services can help ensure RC/NCC/NGECN efforts address the gaps and barriers around accessing genetic services and support. Consumer engagement looks different in each of the 7 regions but there is a strong commitment by all to ensuring meaningful participation and contribution from consumers. NGECN helps unite the efforts around consumer engagement across the 7 regions through quarterly conference calls and one in-person meeting per year. The Program Manager also attends each RC Annual Meeting and gives updates on the project as well as hears from the consumers about their experiences accessing genetic services.
With the help of the NGECN Consumer Advisory Group, NGECN aims to produce resources, trainings, and tools that address the needs of consumers. Every tool or resource that NGECN creates is reviewed by the Consumer Advisory Group to ensure its design, function, and content are both accessible and beneficial to families. Some past resources developed include the Advocacy ATLAS with resources for individuals and families to advocate in 10 different areas for themselves or their child with special healthcare needs. Other resources including GenesinLife.org and DiseaseInfoSearch.org provide information on genetics and health, genetic services, and ways to find support for individuals and families. NGECN also helps deliver patient-friendly educational materials around genetics and health to communities through several initiatives.
Throughout the year, NGECN designs campaigns to get materials out to communities. Campaigns reach individuals directly and through clinics, healthcare providers, and partner organizations. Several of the materials are available free of charge for download or to order online.
In Spring of 2014, NGECN funded 7 Impact Awards
for one year to build upon their existing outreach and education efforts and significantly expand their impact on individuals and communities. The goal of this project is to identify strategies for maximizing efforts to improve access to genetic services.
NGECN created the Guide to Successful Outreach and Education Programs
to highlight effective strategies for reaching, engaging, and educating consumers around genetics and health. The guide includes several projects created by the Regional Collaboratives and other organizations.
If you have questions or ideas for collaborating with the NGECN, please contact firstname.lastname@example.org