GESS: Understanding Genetics

Genetic Education Support System (GESS)

The GESS includes a range of useful genetics themed resources for families, outreach workers, and medical staff. Resources include links to basic information on genetics, tips on what to watch out for, suggestions for navigating care, as well as organizations able to assist you in your efforts. Please click on the appropriate link below to review and learn more about this important and dynamic field.

For Families

I’ve been asked to think about “newborn screening”. Why is this important?

Newborn screening is routinely completed in all New England states.  Details may be found here:

I’m frustrated with fighting with insurance companies and Medicaid about coverage for my child’s complex medical needs. Does NERGN have any suggestions?
I’m trying to help my child’s teachers, primary health providers, and my own family better understand his/her genetic condition, and help classmates feel comfortable. What do you recommend?
What non-governmental resources are available for supporting me in caring for my child?

For Family Outreach, Community Health, Social Workers and Others

I suspect that a patient/client of mine may have a genetic disorder. What should I be looking for?

Helpful information about “thinking genetically” may be found at these links:

I’ve been asked about “newborn screening”. Why is this important?

Newborn screening is routinely completed in all New England states.  Details may be found here:

Also see…

What non-governmental resources are available for supporting families in caring for their child?

For Medical Providers

I am a clinician and one of my patients has been recently diagnosed with a genetic/metabolic condition. Where can I get a quick refresher?

For your waiting room: GEMSS poster and bookmarks  

I’m frustrated with fighting with insurance companies and Medicaid about coverage for a child’s complex medical needs. Does NERGN have any suggestions?

See if these links help: 

For your waiting room: 3 Hints to Help You Navigate the Appeals Process  (one page infographic and/or booklet)

If your organization is interested in a training session for staff on how to apply genetics knowledge as a part of your support services to families, please contact Ed Kloza (ekloza@ipmms.org).