Resources

Resource Category
Family Health History
Knowing and acting on your family health history is an important way to protect your health. Collect your family health history and share it with…
Genetics
Autism, Genetics, and Genetic Testing
Animated video from Precision Medicine in Autism
Audience: Families
Genetics
Autismo, Genética y Pruebas Genéticas
Animated video from Precision Medicine in Autism - Spanish language
Audience: Families
Genetics
New England Family-Led Organizations: A Reference Guide
Compiled by the National Genetics Education and Family Support Center. Explains the different family-led orgs in New England and nationally and…
Audience: Families
How Cystic Fibrosis Research Informed Social Distancing Rules
HealthMatch article: "6 Feet Apart — How cystic fibrosis research helped establish social distancing rules"
Audience: Families
COVID-19, Genetics
Genomics Education Resources for Health Professionals
Resources from the National Human Genome Research Institute providing reliable, up-to-date information about genomics competencies and patient care
Audience: Professionals
Genetics
Comprehensive Evaluation of the Child With Intellectual Disability or Global Developmental Delays
Article by Moeschler, MD and Shevell, MDCM in Pediatrics
Audience: Professionals
Genetics
When to Suspect a Genetic Condition
An article by Solomon, MD and Muenke, MD, published in American Family Physician
Audience: Professionals
Genetics
Red Flags for a Genetic Disease
Information from the NIH bookshelf: Understanding Genetics: A New York, Mid-Atlantic Guide for Patients and Health Professionals
Audience: Professionals
Genetics
Faces Redefining the Art of Medical Education (FRAME)
A program of Positive Exposure that gives future genetic counselors, nurses, physicians, OT’s, PT’s, families and communities, a more robust…
Genetics
Faces of Genetics and Beyond
Rick Guidotti, former fashion photographer who founded Positive Exposure, a nonprofit dedicated to photographing individuals who have genetic…
Genetics
Steps of a Functional Behavioral Assessment
What is a Functional Behavioral Assessment and more from Understood.org
Audience: Families
IFSPs, IEPs, and 504 Plans
Early Childhood PBIS
Promoting young children’s healthy social and emotional development with foundational trainings from the Pyramid Model Consortium
Audience: Families
IFSPs, IEPs, and 504 Plans
Social and Emotional Development
Center on the Social and Emotional Foundations for Early Learning at Vanderbilt University
Audience: Families
IFSPs, IEPs, and 504 Plans
About Child's Visit to a Genetics Clinic - Spanish
NERGN brochure: A few things to know about your child's visit to a genetics clinic, Spanish version
Audience: Families
Genetics
About Child's Visit to a Genetics Clinic
NERGN brochure: A few things to know about your child's visit to a genetics clinic
Audience: Families
Genetics
Integrating AAC into the Classroom
Using Augmentative and Alternative Communication (AAC) in the Classroom, from the American Speech-Language-Hearing Association
Audience: Families
IFSPs, IEPs, and 504 Plans
Functional Behavioral Assessments
Practical Functional Behavioral Assessment Training Manual for School-Based Personnel from the Center on Positive Behavioral Interventions &…
Audience: Families
IFSPs, IEPs, and 504 Plans
Seizure Action Plan for School
American Academy of Pediatrics: Forms for in school seizure protocol, emergency plan for non-medical staff, and transport of student with special…
Audience: Families
IFSPs, IEPs, and 504 Plans
Letters of Medical Necessity Templates
Template for Letters of Medical Necessity for metabolic conditions; from Nutricia
Audience: Families
Insurance and Appeals