Genetic Resources

Contact if: 

• You are in need of assistance to find a genetic clinic near you 

Find a Clinic – Mountain States Genetics

Children’s Hospital Colorado – Anschutz Medical Campus

13123 East 16th Ave., Aurora, CO 80045
Main Hospital: 720-777-1234
Genetics and Inherited Metabolic Diseases: 303-724-2370
Special Care Clinic: 720-777-6739
Developmental Pediatrics: 720-777-6630

Explore these resources if: 

• You are looking for national resources for a specific genetic condition
• You are looking for national resources which are applicable to many different genetic conditions
• You are looking for genetic resources that are not state specific

National Coordinating Center for the Regional Genetics Networks

Resource Repository (ReRe) – National Coordinating Center for the Regional Genetics Network (nccrcg.org)

National Genetics Education and Family Support Center

Genetic and Rare Diseases Information Center

OMIM – Online Mendelian Inheritance in Man

NCBI- Gene Reviews: Basic Search

NCBI- Gene Reviews: Advanced Search

GeneCards – Human Gene Database

Baby’s First Test

Screening Technologies and Research in Genetics (STAR-G)

MedlinePlus: Genetics

NIH Genetic Testing Registry (GTR) – NCBI

Help Me Understand Genetics: MedlinePlus Genetics

Genomic and Genetic Glossary

Rare Disease Network

Undiagnosed Diagnosed Disease Network (UDN)

Deaf & Hard of Hearing Questions for Geneticist

Disease Info Search  

Genomics Education Websites

NORD- Rare Disease Database 

PBS- Learning Media: The Gene

Explore these resources if: 

• You are looking for regional resources for genetic topics
• You are looking for genetic resources that are not state specific
• You are looking for resources for families in the Mountain States Region
• You are looking for resources for families from other Regional Genetics Networks across the country

National Coordinating Center for the Regional Genetics Networks

Regional Genetics Networks

Gene in a Box

Time 4 Genetics Clinics

Main Algorithm Document: Developmental Delay 

Supporting Developmental Delay Documents for Providers 

Supporting Developmental Delay Documents for Families 

Main Algorithm Document: Ehlers Danlos Syndrome (EDS) 

Supporting EDS Documents for Families

Journey Through Diagnosis

Gemms- Genetic Education Materials for School Success

Genetic Testing Toolkit

MSRGN Red Flags 4 Genetics Handout (English)

MSRGN Red Flags 4 Genetics Handout (Spanish)

Pediatric Red Flags ENGLISH (NYMAC)

Pediatric Red Flags SPANISH (NYMAC)

Receiving a Diagnosis: The Journey From Cope to Hope

Explore these resources if: 

• You are looking for Colorado state specific resources on genetic topics 
• You are looking for Colorado specific navigation for genetics

MSRGN Colorado State Team Page

Colorado Genetics Navigator email – Coloradogenetic@gmail.com

National Organization for Rare Disorders (NORD) – Colorado

Explore these resources if: 

• You are looking for resources to help families and providers identify red flags for genetics

MSRGN Red Flags 4 Genetics Landing Page

MSRGN Red Flags 4 Genetics Handout (English)

MSRGN Red Flags 4 Genetics Handout (Spanish)

Pediatric Red Flags ENGLISH (NYMAC)

Pediatric Red Flags SPANISH (NYMAC)

Red Flags Mnemonic for providers

MSRGN Time 4 Genetics: Red Flags 4 Genetics Topic Area for Providers

Explore these resources if: 

• You are looking for resources regarding Genetic Testing

Genetic Testing FAQ

GENETIKIT Genetic Testing Consequences

Genetic Testing Toolkit

Challenges in Interpretation & Explanation of Exome Sequencing | Southeast Regional Genetics Network (SERN) (southeastgenetics.org)

NIH Genetic Testing Registry (GTR) – NCBI

Testing for Genetic Conditions | Genes in Life

MSRGN Time 4 Genetics: Genetic Testing Topic area for providers

PLUGS toolkit for families and caregivers

Explore these resources if: 

• You are looking for genetic resources for Primary Care Providers including MD’s, DO’s, PA’s, NP’s, Nurses and staff

MSRGN Time 4 Genetics Library

MSRGN Genetics Summit 2021

MSRGN Genetics Summit 2022

GECKO- Point of Care 

GECKO- Point of Care: Family History Form

GENETIKIT Pearls

GENETIKIT Genetic Testing Consequences

GENETIKIT Family History Tool

Red Flags Mnemonic for providers

TREATABLE ID – an interactive tool for the clinician

Genetic Testing Toolkit

Genomics Education Websites

Explore these resources if: 

• You need support and would like to connect with others with similar circumstances/diagnoses 
• You would like to learn more about being an advocate for your child or family member
• You would like to connect with patient and professional societies who have a focus in genetics

American College of Medical Genetics and Genomics

National Society of Genetic Counselors 

NORD Patient Assistance Programs, Medication Specific Assistance Programs

Global Genes 

EveryLife Foundation for Rare Diseases

Family Voices

Genetic Alliance

Save Babies Through Screening Foundation

Rare Disease Day 

MyGene2 Family Outreach

RareConnect

DNAandU Outreach Tool

Open Treatments – Enabling treatments for rare diseases

n-Lorem – Patient Empowerment 

Matchmaker Exchange

GeneMatcher

Care-for-Rare America Inc.

Explore these resources if: 

• You are looking for a clinical trial for you or your loved one’s genetic diagnosis
• You are interested in learning more about genetic research

ClinicalTrials.gov

NIH Clinical Research Trials

NIH RePORT ⟩ RePORTER

Rare Diseases Clinical Research Network (RDCRN) | National Center for Advancing Translational Sciences

GWAS Catalog

Coriell Institute for Medical Research (NIGMS Human Genetic Cell Repository)

International Mouse Phenotyping Consortium

TREATABLE ID

Broad Institute

Rare Genomes Project

DECIPHER v11.11: Mapping the clinical genome

Wellcome Sanger Institute

Explore these resources if: 

• You need general information regarding types of insurance and benefits
• You need to better understand insurance terms and how insurance works
• You need to know how to appeal an insurance denial for a test, procedure, or medication

Insurance and Medicaid – Complex Child

Medical Home Portal – Appealing Funding Denials

Health Insurance 

Health Care Reform | Center for Advancing Health Policy and Practice

Explore these resources if: 

• You need specific genetic resources for the school setting
• You need guidance for a specific genetic condition when writing an IEP or 504 plan

Genetic Education Materials for School Success (GEMSS)

National Association of Special Education Teachers: Genetics in Special Education Series

Explore these resources if: 

• You are looking for resources to assist with care coordination
• You are looking for resources to help with partnering with medical professionals
• You want to explore videos specifically highlighting the transition of becoming an adult and various aspects of care

Partnering with your Doctor – The Medical Home Approach ENGLISH

Partnering with your Doctor – The Medical Home Approach SPANISH

AAP National Resource Center for Patient/Family-Centered Medical Home

VIDEO Becoming an Adult: Deciding Where to Live 

VIDEO Becoming an Adult: Legal and Financial Planning 

VIDEO Becoming an Adult: What Can I Do After High School? 

VIDEO Becoming an Adult: Taking Responsibility for Your Medical Care

Care Coordination: The Family Perspective

Explore these resources if: 

• You or your child are in the process of getting a genetic diagnosis
• You or your child has recently received a genetic diagnosis

Journey Through Diagnosis Guide

VIDEO on Your Genetics Appointment

VIDEO on Receiving A Diagnosis: The Journey from Cope to Hope from the Midwest Regional Genetics Network

Explore these resources if: 

• You or your child are currently undiagnosed 
• You are looking for resources for families who are undiagnosed but suspected of having a genetic condition

About the Undiagnosed Disease Network (UDN)

Rare and Undiagnosed (RUN)

Explore these resources if: 

• You are looking for more information on what “family history” means in the context of genetics
• You are looking for resources to help prepare you for a medical appointment where you or your child’s family history will be discussed

CDC resources on family health history

Knowing is Not Enough—Act on Your Family Health History | CDC

GECKO- Point of Care: Family History Form

GENETIKIT Family History Tool

Explore these resources if: 

• You are looking for basic information about genetics
• You are looking for information for families about genetic services

The Genetic Recipe Infographic (MSRGN/NYMAC)

Genetic Change Cooking Infographic (MSRGN/NYMAC)

Medline Plus: Your Guide to Understanding Genetic Conditions

Help Me Understand Genetics

NHGRI’s Online Genetics Education Resources

Description of Genetic Services in English (Heartland RGN)

Description of Genetic Services in Spanish (Heartland RGN

Genetic Conditions and Services: An Introduction (Heartland RGN)