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Texas · Rare genetic complexities in children

No family should walk the road of rare genetic complexities alone.

Bluebonnet Genome Foundation is here to help families get answers, reach the right specialists, ease the financial strain, and fund the research that leads to treatments.

A baby laughing while sitting in a field of bluebonnets

Why this matters

Each condition is uncommon. Together, they affect millions.

For many families the search for a child's diagnosis takes years. Finding a genetic cause early can open the door to treatment before damage is done.

7 in 10

rare diseases begin in childhood. In all, rare diseases affect more than 30 million Americans.

Sources: European Journal of Human Genetics (2020), National Organization for Rare Disorders
4 in 5

rare diseases are genetic in origin. A genetic test can confirm or rule out a genetic disorder.

Sources: National Human Genome Research Institute, MedlinePlus
60

conditions are on Texas's newborn blood screen today. Genome sequencing can look for hundreds more at once.

Sources: Texas DSHS, June 2026, Ariadne Labs
Three children laughing together in a field of bluebonnets

Need help now?

You don't have to wait for us.

Trusted organizations in Texas and across the country can help families today, from finding a diagnosis to paying for genetic testing.

See resources for families

Our story

Born from lived experience

Our founder is a rare disease researcher and a mother of five, and two of her children live with rare genetic complexities.

She knows the long wait for a diagnosis, the fear of waiting on test results, and the strain a family carries when no one can tell you what comes next.

Bluebonnet Genome Foundation exists so no family walks that road alone.

Read our story

The Lone Star Genome Act

We're working toward the 2027 Texas legislative session on a voluntary, opt-in newborn genome screening pilot with strong privacy protections for every family.

Read the proposal