Education & Outreach: Activities

The Education & Outreach Work Group launched a groundbreaking website in 2012 which addresses the information needs of educators, students and families: GEMSS - Genetics Education Materials for School Success (www.gemssforschools.org). As of December 2014, the site has reached over 35,000 unique visitors in 160 countries. The number of conditions featured has grown from seven to roughly 30. Feedback has been phenomenal but we are continually working to improve the site. 

This year, headed by Leah Burke MD, the focus of the work group will be to expand the reach and utility of GEMSS.

  • The website will be promoted to a broader range of audiences, thanks in large part to our Parent Ambassador Program and to the GEMSS Action Group under the New Hampshire Leadership Series. 
  • Through a partnership with NH LEND (Leadership Education in Neurodevelopmental and Related Disabilities), we are enhancing our treament of Autism Spectrum Disorders. 
  • The work group will enhance the GEMSS website by developing resources for more genetic conditions.

Accomplishments

In past years, the work group collaborated with the NH LEND program to 1) evaluate the usefulness of the site via a national survey and Google Analytics; and 2) launch a Facebook page to enhance dissemination efforts.  

Improvements to the GEMSS thus far have included adding more information about IEP/504 Plans, developing the "Meet a Child" series, developing content for children who are undiagnosed, and adding content about transitions. 

Prior to launching GEMSS, the work group worked with Ann Dillon, Clinical Assistant Professor, University of New Hampshire, to create a flow chart to inform and prepare special educators as they face the complexities of working with children with genetic conditions in the classroom. Focus groups of educators were conducted to refine the charts. This effort was applied in the development of the GEMSS website.

Prior to that, the work group developed an on-line brochure to provide information on Newborn Screening for parents; updated and provided translated versions of an online New England Genetics Resource Directory; adapted information for clinicians, nurses, educators, social workers and varied ethnic groups, furthering the awareness and knowledge of those audiences.