The NEGC/LEND work group meets twice a year: in June as a region, and in November as participants in a jointly held national meeting sponsored by the Association of University Centers on Disability (AUCD) and the National Coordinating Center (NCC). Additionally, members have contact as needed to move the work forward.
At the November meeting, each region develops an Action Plan which guides much of the work throughout the year.
NH LEND trainees are collaborating on three projects with the NEGC this year:
- Creating a Learning Module for Genetics Education Materials for School Success (GEMSS) - training materials for higher education classes
- Helping with NEGC overall program evaluation
- Helping analyze results of a survey conducted by the Health Care Access & Finance work group regarding health care coverage and access
Featured below at their Capstone poster presenation are Erika Baril, MA, CCC-SLP with Karen Smith, Raven Vigars, MS, OTR/L, and Ashley Hamill, BA.
One of the early goals of this work group was to establish a Genetics Learning Objective for New England LENDs:
To impart an understanding of how genetics influences health, development and behavior; and, to raise awareness of the ethical issues that have arisen with the application of advances in genetic testing and treatment technologies on both individuals and systems.
In November 2013, the following Action Plan was developed:
- Explore existing projects that highlight public policy in the LEND and NEGC to look for overlap. Update links to the resources to LEND.
- Facilitate the two genetic counseling students from MA LEND program to come to the NEGC annual meeting.
- Vermont LEND Directors will analyze LEND curriculum regarding what needs to be known about genetics to manage conditions in the medical home
- Assist or facilitate LEND Director from UMass to connect with other genetics programs particularly in CT/RI
- MA LEND Director will look at the possibility of long distance involvement of genetic counselors for LEND
- NEGCs Education and Outreach work group has engaged NH LEND trainees to contribute to the continued development of their website GEMSS: Genetic Education Materials for School Success (www.gemssforschools.org). This is a website for educators working with children with genetic conditions. In 2013-2014,LEND trainees helped evaluate the utility of the website with a survey analysis, and launched an effort to disseminate GEMSS via social media.