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 told that my baby will have "newborn screening". What's that all about?

Every New England state requires newborns to be tested for a number of genetic (and non-genetic) disorders. These websites will explain more:

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

Each state has its own Medicaid policies and each insurance company provides different levels of coverage, though some strategies may work well in general. See if these links help: 

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?

There are several very active peer-support groups in New England, many linked to national networks. They can help you nativigate the system and more. 

This Reference Guide does a great job describing what different family-led organizations do and how they intersect. Once you've clicked on the link for NERGN, scroll down for state-specific contact information. Thanks to the National Genetics Education and Family Support Center for developing the guide! 

Connecticut

Massachusetts

Maine

New Hampshire

Rhode Island

Vermont

Regional

National

For Family Support Staff, Community Health Workers, Social Workers and Others

Focus Area: Genetics Updates / How NERGN can help
Training provided to Family Voices staff
Ed Kloza, CGC
9/17/2018
Captions coming soon.

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?

There are several very active peer-support groups in New England, many linked to national networks.

This Reference Guide does a great job describing what different family-led organizations do and how they intersect. Once you've clicked on the link for NERGN, scroll down for state-specific contact information. Thanks to the National Genetics Education and Family Support Center for developing the guide! 

Connecticut

Massachusetts

Maine

New Hampshire

Rhode Island

Vermont

Regional

National

For Medical Providers

Focus Area: Genetic Testing
Genetic Testing: What Does the Primary Care Provider Needs to Know
Leah Burke, MD
10/15/2018

Focus Area: Metabolic
Genetic and Metabolic Considerations
Leah Burke, MD & Mark Korson, MD
6/18/2018

Focus Area: Failure to Thrive
Failure to Thrive
Mark Korson, MD
5/7/2018

Focus Area: Autism
Pediatric Genetic Testing and Behavioral Health in the Setting of Autism
Leah Burke, MD
3/5/2018

These videos are part of Project ECHO Complex Integrated Pediatrics, made possible through a collaboration with the Weitzman Institute.

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).