Resources

Pre-Natal Genetic Screening
I am pregnant and have questions about pre-natal genetic screening. Where can I go for more information?
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:

Newborn Screening after Baby's Birth
I am about to deliver my baby, what do I need to know about Newborn Screening?

The organizations: 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.

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

Newborn Screening Conditions
My child or family member was diagnosed with a condition on Newborn Screening. Where can I learn more about my child's condition?

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.

When to See a Geneticist
My child or family member is having medical challenges; how do I know if they should see a geneticist?

The organizations Genetic Alliance and Texas Dept. of State Health Services 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?

Family Health History
We have a family history of a genetic condition in our family, how can I talk to my doctor about our family health history and find out how it may impact my health or the health of my child?

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

Insurance Coverage
My child is suspected of having a genetic condition, will our insurance cover genetic testing?

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?”

Genetic Resources For Families
I am looking for resources that can help me understand genetic topics and also learn about genetic conditions. Where can I look?
Genetic Diagnosis and Finding others with the same Genetic Condition
My child or family member received a genetic diagnosis, where can I learn more about the condition and connect with others who may have the same genetic condition? 

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

Undiagnosed Conditions
My child or family member is undiagnosed, possibly with a genetic condition, what resources are available?

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)

Genetic Conditions and School Attendance
My child or family member has been diagnosed with a genetic condition, and we have questions about school attendance. Where can we go for resources?

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)

Genetic Testing Questions
I have questions about Genetic testing, where can I learn more?

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:

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

Family Support Organizations (not Disease or Genetic Condition specific)
I have questions about where I can find support for myself, as a parent or family member, where can I connect with others? (including support for special education law, navigating the health care or mental health system or emotional support)

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.