For families
Help for families, today
We're not offering services yet. These organizations can help right now.
We don't receive anything from them for being listed.
This list is for information only. Always talk with your doctor about testing and treatment.
Know a group that should be here? Email info@bluebonnetgenome.org.
Finding a diagnosis
- Undiagnosed Diseases Network FoundationFree help for people and families searching for a diagnosis.
- National Organization for Rare Disorders (NORD)Information on thousands of rare diseases, patient assistance programs, and a network of Rare Disease Centers of Excellence.
- UTHealth Houston Rare Disease Center of ExcellenceA NORD Center of Excellence with genetics clinics, genetic counselors, and social workers.
Support in Texas
Paying for genetic testing
- Baylor Genetics financial assistanceFinancial help for qualifying families who test at Baylor Genetics in Houston.
- Texas MedicaidTexas Medicaid covers some genome and exome sequencing with prior approval. Ask your child's doctor whether it applies.
Immune disorders
Questions to ask your child's doctor about genetic testing
Bring these questions to your child's appointment. It helps to ask them before the test and again when the results come back.
- 1
What is this test looking for, and how could the results change my child's care?
- 2
Which kind of test is it (one or a few genes, the exome, or the whole genome), and could it miss something?
- 3
What could the results tell us, what might they not tell us, and what happens next if the answer is unclear?
- 4
Could the test find something unrelated to why we are testing, or tell us something about other family members?
- 5
What will it cost, will insurance cover it, and how long until we get results?
- 6
Who will see the results, and what happens to my child's sample afterward?
What a genetic counselor does
A genetic counselor is a health professional with advanced training in medical genetics and counseling.
Genetic counselors can meet with your family before or after a genetic test to help you understand whether testing might be right for your child and to explain what the results may mean.
They also offer emotional support while you make decisions, and many can meet by telehealth.
Find a Genetic Counselor (National Society of Genetic Counselors)
Expecting a baby?
The Lone Star Genome Act would let Texas families choose genome screening at birth, at no cost, to find treatable conditions early.
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PlannedTell me when help opens
Help from Bluebonnet Genome Foundation
We're building specialist connections and practical relief for families: help with bills, co-pays, travel, therapy costs, and respite. Neither is open yet.