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Healthcare Providers and GEMSS


COVID-19 Resources compiled by the National Coordinating Center and Regional Genetics Networks supported by HRSA


GEMSS is a collaborative care tool to support children with genetic conditions. Although initially created for school teams, providers and parents have also found it helpful. GEMSS can help build the knowledge that promotes collaboration and inclusion, leading to well-rounded lives.

Simple geometrical diagram showing families, schools and health care providers working together through GEMSS

“Optimal health care for children and youth requires a commitment to collaborative family-centered care. Such care is critical for children with metabolic and genetic conditions. GEMSS is a superb model of collaboration, incorporating information from families, subspecialists and providers.”

Greg Prazar, MD
Medical Home Work Group Chair
New England Genetics Collaborative



Using this Website

Note: This website is not intended to be a diagnostic tool. It is intended to help providers talk with families and understand school challenges.

Condition-specific Information

  • Click on the condition in which you are interested (a link for printing is found here).
  • You’ll see a blue “Healthcare Providers” button. This Provider Version includes:
    • Physical characteristics and/or symptoms
    • Recommended routine surveillance
    • Emergency protocols
    • Specialists who may be involved
    • Letters of Medical Necessity
    • Seven important areas of school life (Medical/Dietary Needs; Education Supports; Behavior & Sensory Support, etc.) which will help you talk to families and schools.
    • Resources
  • General Tips and Strategies may be helpful if you have families of children with undiagnosed medical or development conditions.

General Resources

Click here for General Resources.