Resources

The American Congress of Obstetricians and Gynecologists (ACOG) have a few resources on their website that can help you with some questions you may have:

• Genetic Screening Tests
• Genetic Diagnostic Tests
• Genetic Disorders Pregnancy
• Prenatal Genetic Testing Chart

The organizations: Expecting Health, Baby’s First Test, American Congress of Obstetricians (ACOG) and The American Association of Pediatrics (AAP), have some resources on their website that can help you learn about newborn screening before you deliver your baby.

Expecting Health: 
Navigating Newborn Screening Learning Module

Baby’s First Test:
Before Birth
Screening Procedures

ACOG
Newborn Screening Info

AAP (in conjunction with HRSA):
Newborn Screening Tests Brochure
7 Things Parents Want to Know

The organization Baby’s First Test has some resources on their website that can help you learn more about your child’s condition. Use the “Quick Find” search box at the link below to type in the name of the condition to learn more.

• Find A Condition Search
• Screening Outcomes

MSRGN’s Genetic Ambassador group developed this Red Flags 4 Genetics Handout for Families that can help a family and their doctor determine if a child should see a geneticist.

These organizations have some resources on their website that can help you decide if you need to seek genetic services for your loved one.

Genetic Alliance book: Understanding Genetics
Indications for a Genetic Referral
Red Flags for Genetic Disease

Texas Dept. of State Health Services
When Does a Child/Adult need Genetic Services?

Genetic Alliance, the Surgeon General, the Center for Disease Control (CDC) and The AAP’s Genetics in Primary Care Institute have family health history tools and resources that can help you have the conversation with your doctor about family history of genetic conditions.

Genetic Alliance
“Does It Run In The Family?” Tool Kit

Healthcare Provider Card

Surgeon General
My Family Health Portrait

CDC
Family Health History

Genes in Life and Genetics Home Reference have information about genetic testing and insurance coverage. You may also want to check directly with your insurance plan provider and Medicaid provider if your child qualifies.

Genes in Life
Insurance and Financial Planning
Reimbursement
Genetics Home Reference

In addition there are other ways to pay for genetic testing and medical care. The Genetics and Rare Disease Information Center has some Tips on Financial Aid that you may find helpful. Syndromes without a Name USA also has some resources in their “How to get exome or genome sequencing?”

Genes- What are they and what do they do? (overview)

Family Voices featured Genetics in 2 of their recent Resources eBlast:

January 2019 – Regional Genetics Networks

March 2019- Genetic Resources for Families

Disease Info Search and the Genetics and Rare Disease Information Center have information about genetic conditions and support groups.

Disease Info Search
By using the “Enter a Condition Name to Search” you can search thousands of conditions

The Genetics and Rare Disease Information Center
Support for Patients and Families

The following organizations have information, resources and support for those families who have loved ones with an undiagnosed condition.

Undiagnosed Disease Network (UDN) (Funded by the NIH)
About the UDN

The Genetics and Rare Disease Information Center (GARD)
Tips for the Undiagnosed

Family Support Organizations:
Syndromes Without A Name (SWAN)
Rare and Undiagnosed (RUN)

The following organizations have information, resources and support for those families whose loved one is attending school:

GEMSS – Genetics Education Materials for School Success

The aim of GEMSS is to assure all children with genetic health conditions succeed in school-life. Children who have genetic conditions, about 1 in 20, are members of neighborhood schools across the country. GEMSS encourages collaboration between families, school, and medical professionals.

Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs)

The Center for Parent Information and Resources is a central hub with information about Parent Training and Information Centers (PTIs) and Community Parent Resource Centers (CPRCs).

PTIs, funded through the federal Individuals with Disabilities Education Act (IDEA) help families understand special education services for CYSHCN to age 22.

CPRCs help families who need additional language supports.

To find the PTI and CPRC in each of the states in our region: (see the chart for your state contact)

The organizations linked below have general information about genetic testing. If you are looking for more information about a specific genetic test, this site may be helpful:

• Genetic Testing Registry

General Genetic Testing Information:

Genes In Life
Testing Genetic Conditions

Genetics Home Reference
Genetic Testing Questions

National Human Genome Research Institute
Frequently Asked Questions About Genetic Testing

The document linked below provides an overview of 4 family support organizations for those with genetic conditions and other special health care needs. If you are looking for more information about a specific organization you can click their link below or to find the support organization in your STATE, click on your state page here.

The Genetics Education & Family Support Center OVERVIEW document of Family Support Organizations- click here.

• Family Voices (FV)
• Parent to Parent USA (P2P)
• National Federation of Families for Children’s Mental Health (NFFCMH)
• Center for Parent Information and Resources (PTI’s and CPRC’s)